scleroderma – Page 11 – Yarn, Books & Roses

First Week in September: Three Bowls, Three Mitts, and a Reyna Shawl

I am knitting and crafting like crazy. Actually I’m enjoying the balmy weather of summer’s end and I’m a little nuts because I just can’t seem to get everything done. The flowers on my deck are at their best. The crickets are chirping. The temperature outside is just about perfect and I am spending my time clicking knitting needles and feeling a little less than my normal cheerful self (more about that below). Still I am making progress and the setting is just about perfect. This afternoon I decided to set up the laptop on my backyard deck and let you all know what I’ve been up to. Here it is.

My sister’s birthday was the 5th of September. I bought her a card a couple of weeks ago and I sat down and got these bowls done in plenty of time to send to her. Here the are!

Fabric bowls — A set of fabric bowls. Bet she never saw this coming! She does sew a lot and I thought that she might find these useful in her crafting area or maybe on her desk. I found the pattern online at Quilter in Motion.

Fabric Bowl — I just love the fabric! This is a Laurel Burch pattern that I found last year.

I still haven’t mailed them off to my sister. They are now days overdue but I do have an excuse (OK, it’s pathetic, but still… It’s my excuse and I’m sticking to it!). My rheumatologist started me on a new medication for my systemic sclerosis (scleroderma) called CellCept, and it just doesn’t like me. Every part of my digestive system hurts!! Boo! Today I got up and decided that I am done with heartburn (not to mention middle of the night barfing) and e-mailed my doc to ask for something else from the land of pharmacological wonders. This morning I didn’t take my pill and this afternoon I plan to make the trip to the post office. Hang on sis! They really are coming…

Now the knitting makes sense, doesn’t it. No matter how upset my digestive system is I still manage to eat (yogurt is my friend) and knit. Lots of knitting has been going on. I dug in this last week and worked like crazy on the mitts that I am designing for Alta Vida Alpacas for Alpaca Farm Days which happens later on this month. They plan to sell kits of yarn with the pattern to visitors to the farm. I’ve been trying to make simple patterns that show off the yarn. Here’s what I’ve come up with:

Mitts — This yarn is sportweight, 50% cotton (which gives it some slubs and texture), 25% wool and 25% alpaca (yum!). The yarn knits up great, feels light on your hands but is also soft, comfy and warm. I wanted them to look easy to knit (hello… trying to sell some kits here!!) but appealing. Please lay on the feedback people!

Like those colors? This is Colorado (AKA Broncos Country) and the football season starts this coming week. Yeah Broncos!! The thumb on the stripped mitt is a little different from the usual shape that I favor and I’m still thinking of knitting a stripped version with slower increases. The thumb on the solid mitts is more like what I like to knit and wear. It fits your hand with no pull across the hand and the ribbing on the top of the thumb is loose enough to allow you to wear the mitts over gloves. (Reynaud’s makes you think about things like that!) Be honest here: does that stripped thumb look goofy? Should I change it?

So the knitting continues. I want to make the mate for the beaded mitt before the end of the week, and then will do a pair of stripped mitts with a more gradual thumb increase in blue and off-white. Next I have to write the patterns, but I’ve kept lots (and lots!) of notes while I knitted so I am feeling pretty positive about that next step.

Finally, I’m making some steady progress on the only knitting project that is just for me. Check out the Reyna shawl that is finally getting towards the end of it’s knitting journey.

That’s the week. I’ve been reading a lot too, but I think that should wait for another post. And the flowers that I’ve got blooming on my deck are so fabulous they are crying for a post of their own…

Hope you all had a great week (and no barfing!!).

New Chinese Curse: May You Have An Interesting Disease

It has been two months since I started the drug methotrexate for my systemic sclerosis (scleroderma). I put off starting the drug for a few months as I was concerned about potential side effects (well, for one thing, it increases the chance that I will develop cancer. Since I’m now at high risk for lymphoma that kind of gave me some pause…), but struggling with fatigue and other annoying symptoms I finally made the call to my rheumatologist and started on the drug.

The first month was a little hard; nausea, headache, more fatigue, and what I called the dizzy-wobblies. My hair started falling out. By the second month, however, I began to notice that my muscles had stopped hurting. I had more energy. The edema in extremities was definitely much better. I was out of the house and doing much more. Hey, this is improvement. Go methotrexate! I was ready to make the pom-poms and sign up for the cheer squad.

Then more downsides began to emerge in the second month. I started to notice that my knees really hurt the day after I took the methotrexate pills. As always, I checked the Internet to see if anyone else had noticed this. Yep. It’s a thing. I decided to baby my knees a couple days a week and to keep on with the drug. Then my back started to hurt, I noticed a rash on my arms the same day that my knees hurt, and itching became a thing. My ribs started up with shooting pains. The pain spread to the entire right side of my lower ribs, I struggled to breathe and it was hard to raise my arm. Yikes!! The pain was so widespread it didn’t seem reasonable that it was just a cracked rib…

IV in arm. — Here I am with the IV tapped off so I could make the trip to the CAT Scan machine.

That’s how I ended up at the acute diagnostic center run by Kaiser for we after-hours folk that don’t want to go to the ER. (The ER has sick people. When you are on immuno-suppressants you avoid sick people like the plague!) The nurse was nice. The doctor was great. The words “possible blood clot in your lung” and “we want a CAT scan right away” were said. I would have been more upset if they hadn’t also just said “we’re giving you morphine to get this pain under control”. I would have hugged that nurse if I could lift my arm.

Then she blew it. As she stuck me with the needle to start the IV she said, “I once worked with someone who had scleroderma so I’ve heard of it before. Such an interesting disease. She did develop heart problems though, which was sad since she was so young.” Great. This is sort of like a Chinese curse: May you have an interesting disease. I grumped about her comment to my son who was there with me. “Well, you have to admit, it is kind of interesting,” he said.

Aside: It is an interesting disease. One of the great ironies of my life is that I have a degree in molecular biology and once worked in a rheumatology research lab on a scleroderma project. My boss Dr. Angeline Douvas and I at that time used the auto-antibodies from scleroderma patients to capture and identify the protein SCL-70 (topoisomerase). We spent a lot of time speculating about what was going on in these patient’s genes and why that was manifesting itself the way it was in their clinical symptoms. We were suspicious that it might be triggered by a virus. Here’s the paper: I’m the second author. Angie would find my diagnosis to be so interesting but she passed away in 2000 before I became sick. Yep, it is all so interesting. Anti-centromere antibodies! What the heck is going on here?! This is an important disease that should be researched not just for a cure to help people who have it, but to also gain essential understandings about cells and genes that can be used in the treatment of many other diseases. As it turns out there is a bill in congress right now concerning scleroderma and fibrosis research and you can contact your congressperson using this link.

Still, I found the nurse’s interested detachment from my personal situation to be somewhat appalling. Still in pain I was wheeled off for the CAT scan, and then waited for my chat with the doctor. NOT a blood clot. NOT my liver. They could see old breaks in my ribs (thank you osteopenia) but NOT a current one. It turned out that it was inflammation of the cartilage in my ribcage, a condition called costochondritis. It’s a scleroderma thing, just another bump in the road when you are dealing with a complex medical condition. Fabulous. The Internet tells me that it usually resolves within a year. OMG! A year??!!! That’s a lot of pain killers! Oh wait; that’s a lot of knitting! Best to look on the bright side.

The next morning my rheumatologist’s office called to let me know I should stop taking the methotrexate. Farewell, methotrexate. It was nice getting to know you but you didn’t play nice with my cartilage. I now have an appointment with my rheumatologist on the 20^th and he will discuss my new drug options with me then. I’m sad to let methotrexate go, but so glad that there are other drugs out there waiting for me to try them out.

Just another day in the life of an interesting disease.

FO Tee, a Garden Swing, and an Excited Spinning Wheel.

I know that I have been a little whiny lately. I started methotrexate a little over a month ago and the adjustment to the new medication has been challenging to say the least. This week was better. Much better. So sorry for the whining. I ~~promise~~ hope that I won’t be doing that again for a long time. Check out all the things that were accomplished this week.

Knitted Tee — I got the Clove HItch Tee finished! Here are the project notes on Ravelry.

Tee Sleeve. — Look at how cute the lace detail is on the sleeve. This yarn is a linen blend and will be cool to wear even though it is a worsted weight knit.

The whole time I was knitting this tee I worried about how big the neck opening was. As soon as it was cast off the needles I tried it on, and yep, too big. I ran a drawstring around the neckline on the inside to draw it up a little and to prevent more stretching. Neckline problem totally fixed: it fits great! The top is loose and a comfy layering piece. I’m thinking that I would like to make a second one with long sleeves using a winter yarn that will be lighter in weight. Maybe in navy blue. I plan to keep that garter stitch band on the sleeve and will continue the sleeves in stockinette below the band.

Crocheted lawn seat. — I have now crocheted the entire back of the lawn swing and am continuing on to make the seat. I draped this over the back of the swing; it’s longer than it looks in the picture.

The lawn seat is coming right along. The fabric will stretch when I sew it into place so it will be more open looking when it is done. I haven’t completely decided how to attach it to the side pieces of the frame. I’m afraid that the attachment solution won’t be very elegant, but hopefully it will be functional.

Wednesday I went out to visit a friend’s alpaca ranch (she has sheep too!!). I am consumed with jealousy. Such cool animals wearing fabulously cool fiber; she has a whole dyeing and processing operation going. I didn’t take any pictures because next week there will be a summer camp there and I get to teach kids how to spin! Ha! Stay tuned for the summer camp report. 🙂

Today I took the car to get its oil changed and battery replaced. I know that this sounds like a small thing, but I am rocking my good week and getting a lot of things done. After I got home I cleaned out the garage and packed my spinning wheel into the car because tomorrow we go to a class to learn how to spin camelid fibers.

Spinning Wheel — Look! The wheel is already strapped into the car and ready to go. It is so excited! This is its first trip out in almost a year; no more sulking in the corner for this little guy.

That’s right. I still have a bag of paco-vicuna that I am nervous about spinning. The spinning class is taught by Chris Switzer who has quite a reputation as a master spinner of these fibers in this part of the world. I am taking the paco-vicuna bag and a chunk of my alpaca fleece with me to the class to get feedback on spinning techniques for the yarn that I dream of creating. Not that I’m intimidated, but the class registration says to bring some things that I’ve made from my homespun yarn with me. I have spent an hour finding things that I’ve made; I’ve decided to only take ~~two~~ three things. Maybe three is too many? If I take two substandard items she might think it’s a fluke. If I have three, it’s pretty sure that’s the type of spinner I am. Whatever. It’s best to not overthink this. I’ll take three that I like and that will be that. I’m taking the class with a friend who likes to spin crazy lace weight yarn and it is going to be wonderful!!

I finished reading all of the bee books this week too. I feel another post coming on. Some of the books were a little bit of a chore to finish, others were just amazing. Hmmm….

Knitting in Aurora

Without a doubt, I am in a mood. I have been feeling poorly for a couple of days now (I took my methotrexate on Monday, and this week it made me sicker than last. Hope this gets better as I continue…), but I needed to pick up prescriptions from the pharmacy and to run some essential errands (the cats expect to be fed on a regular basis; obviously they are out of control!!), so I dragged myself out of bed and feeling a little dizzy and wobbly I headed out.

Here’s the deal. The Kaiser facility where I pick up my prescriptions is right across the street from the Century 16 theater where a gunman (who will remain unnamed in this post) opened fire in a packed theater of moviegoers watching a popular movie on opening night. It was almost 3 years ago today when I woke up to discover that once again Colorado was in the news for a mass shooting, and once again it was happening in my home town. (Sadly I was a resident of Littleton, Colorado at the time of the Columbine shooting). This time the theater is in the heart of my shopping district, and today as I made my rounds to pick up a library book, buy cat food and made a quick stop at the book store to check (what else) the knitting magazines I was almost always in sight of the theater.

It is pretty heart-rending if you think about it. The police drove up the lawn and over landscaping behind the theater that night to transport victims to local hospitals. They drove on the street that I used to go to Kaiser in patrol cars carrying as many wounded as they could fit into their cars. It’s hard to not think of this as the shooter’s trial is now wrapping up after 45 days, and it’s impossible to avoid the day-to-day details of the events in the courtroom. As I entered the Barnes and Noble bookstore in the shopping center I wondered if that man had come here to also check magazines.

Knitting Magazines — Here’s the knitting magazines on an upper shelf mixed in with other fiber-arts crafting magazines. I counted 12 knitting magazines.

So, I am in a mood. I don’t feel well. I spend a lot of time knitting to cope with my altered future due to some serious illnesses. I don’t want to start a debate about gun control, Second Amendment rights, mental illness, the death penalty, the available of military grade armaments through the internet, or the value of explosive rounds. I don’t want to hear that we need more guns to stay safe and that teachers should be packing in their classrooms. Don’t do it!!

I’m just wondering if the world wouldn’t be a better place if bookstores carried a dozen hard to find gun magazines on their shelves, and there were 30 knitting magazines located at the level of children for them to look through. Wouldn’t it be nice if we all felt safe and dreamed of creating nice cushy scarfs, sweaters and mittens that would be beautiful and useful. That knitting was seen as an important meditative activity as wonderful as yoga, jogging, or any of the other stress-busters out there. That the economic power of knitting and other crafting venues drove a huge industry of creative pursuits valued by a large part of the population.

What does this say about us as a people that this isn’t the case?

Return to the Garden: Hello Slugs, I’m Back!!

Summer heat has arrived, I’m feeling better, and it is definitely past time to attend to the needs of the garden. Yesterday I weeded out front in the shade of the morning and then mowed that lawn in the evening (well, I actually mowed only half of the lawn. A neighbor then arrived and took the mower away from me to finish things up. I love my neighbors!!) Look at what has been happening out front while I was engaged in an indoor scleroderma-induced slug-fest.

Rose Bush. — My new roses (Hot Cocoa) that I planted a couple of months ago burst into bloom!

Roses — This is what the blooms look like as they open. I bought these roses as they are recommended for my location (Colorado, USA) even though I wasn’t completely sure about the color. I’m really pleased with the dusty orange color now.. Look how healthy those leaves look! Let’s hope the grasshoppers don’t notice…

Ice Plant in Bloom. — The ice plant that I planted along the front walk has also gone into overdrive. The color made me so happy I didn’t even mind pulling the weeds!

This morning I moved into the back yard with the cats to see what I could accomplish in a couple hours of coolness and shade before the afternoon heats up. Oh dear, it is somewhat of a jungle, and the cats have been running wild.

Cat in Grass. — Guess I need to mow this lawn too. See how intently MacKenzie is looking upward? He’s watching the squirrel the cats had treed earlier this morning after chasing it all over the yard.

Cat nesting in plants. — Yellow Boy has been busy building nests in several locations in the yard and the garden.

Cat in Yarrow. — The yarrow he’s nesting in is all over the garden and I need to rip most of it out. He was so cute I just let him have it today. Wait a minute… I think yarrow can be used to dye wool. Maybe I shouldn’t rip this out yet…

Pincushion flower — My pincushion plants have spread like crazy and the blooms are looking good! Please ignore the grass in the photo. That’s what I did and I feel much better for it. 🙂

Napping Cat — MacKenzie has also staked out a nice shady location to nap in near the cat mint. He is my good boy: he’s sleeping on dirt and not in the middle of a plant. 🙂

Things are looking much better than I thought they would. I weeded like crazy, filled up two garbage sacks, and then planted some new flower seeds in one garden where a rose died over the winter. By then the day was heating up and I was starting to feel a little dizzy again. Time to head back into the house to rest up for afternoon knitting and lawn mowing later.

The best part of the morning? I didn’t see a single slug!!

Knitting Updates: Slug Time

Gosh. Life has really been clobbering me lately. My systemic sclerosis (a type of scleroderma) has become more active this month, and as a result I have been laying around like a slug thinking about the slugs in my garden and posts that I should be writing. (As a special type of irony this is Scleroderma Awareness Month. I’m encouraged to take a pledge to explain about scleroderma to at least one other person. Fabulous. When I feel better I will do that! Post to follow in the near future, or at least before the end of the month.) Predictably I haven’t done anything about the slugs, but I have been collecting pictures and notes for posts. As soon as I start to feel better I will be posting like crazy. 🙂

I am not, however, feeling too poorly to knit. I mean, let’s be serious here! Knitting is Life!! Since I have been carefully rationing my energy expenditures the last couple of weeks I devoted some time to shopping the yarn stash and getting going on some great projects. Say hello to my new companions while binge watching Netflix (how is it possible that I never watched Orange is the New Black before? If I was incarcerated would they still let me knit? If I sent Piper some cute fingerless mitts would she wear them while fixing electrical equipment? See where my mind goes while I’m living the life of a slug? OK, enough of this. Back to the topic at hand…)

June sock — I got started on the June 2015 sock (Petal Socks by Rachel Coopey). Here are the project notes on Ravelry if you would like more details.

Finished sock. — I finished the first June Sock last night. This is the right sock; the left will have the lace details on the instep reversed so that the finished socks mirror each other.

What can I say about this sock? It was pretty easy to knit. The lace for the legs divided evenly on three needles and the chart had a 6 row repeat, so the pattern was easy to manage. When I got the heel turned I switched to two cable needles which worked really well and kept the lace on the instep (which has more stitches at this point) easy to manage. This sock fits my foot well and is nice and high on my leg which will be welcome warmth this winter. 🙂 The lace pattern doesn’t show well with this yarn, but it is so cute I’m over it.

Joker and Thief Yarn — Yarn to knit the second The Joker and the Thief shawl.

When I originally put together the yarns to knit The Joker and the Thief shawl by Melanie Berg I struggled to make up my mind. I ended up packaging together two sets of yarn. I already finished the first shawl a few weeks ago and am really happy with it. This week I also cast on and started the second Joker so I could see how the colors look together. What do you guys think?

Some of my knitting friends are turning out summer tops like crazy. Every time I go to knitting group on Wednesdays at my favorite yarn shop there is a new top being shown off. I am inspired! I am motivated! I am drowning in knitting projects, but since when did that ever stop me? I found a cute tee in the current Interweave Knits Magazine, located 10 skeins of Linen Jeans yarn by Borroco in my stash, and cast on.

Knitted top. — This is the start of the Clove Hitch Tee by Courtney Cedarholm.

I may not have enough yardage for the sweater as shown, but since it is knit from the top down I figure I can knit until I run out and then cast off. Hey, it’s a plan.

Time to go lay down again. Have a good week knitting everyone.

Starlight, a Joker and OMG: Empathy Cards!!

Wow. It has been really, really rainy here. I had three inches of rain in the back yard bucket (my very-low tech rain gauge) before there was a downpour with hail this afternoon. Needless to say I have been making good progress on my knitting this week. Here’s what has been going on.

I got the Sidere Shawl by Hilary Smith Callis finally done and blocked. (Yep. There was another battle with the cats during blocking. This time they totally outdid themselves. One of them THREW UP on the shawl and then tried to bury the mess by raking damp shawl parts over the evidence. I love my cats. I really, really do…) I think that it turned out nice.

Info about the stitch — The shawl used a new stitch to me called Starlight Stitch (Sidere is Latin for starlight) that really made it have strips of interesting texture.

Shawl in Tree — Here is the finished shawl hanging displayed by my ever helpful ash tree. The rows of Starlight stitch open to one side of the asymmetrical shawl. Here are the project notes on Ravelry.

As I was finishing up the shawl I realized that it was now May. Time for another sock!! (As one of my New Year’s resolutions this year I have been knitting a new sock each month using a pattern from one of my many, many sock books and some yarn from the stash. So far I have been good and only used yarn from the stash. Notice I haven’t mentioned whether the stash is growing or getting smaller at this point…) Monday I dug through the sock yarn and here is what I settled on for the May 2015 sock:

This sock is Milfoil by Rachel Coopey from hr book CoopKnits Socks. The yarn is Madelinetosh Sock in the colorway Grenadine. — This sock is Milfoil by Rachel Coopey from her book CoopKnits Socks. The yarn is Madelinetosh Sock Yarn in the colorway Grenadine. Since the sock is divided into two distinct halves with different patterns I decided to knit it using two small cable needles instead of my usual (and beloved) square double pointed needles.

Now that the Sidere Shawl is done I jumped right into knitting the first Joker and the Thief shawl by Melanie Berg. Woohoo!! This one is a keeper for sure, and is lots of fun to knit. Here’s where I am on it right now. The shawl and the sock are knitting up fast, which is a good thing as I have an awful lot of knitting going on.

This week has been one of reflection for me as I knitted along in the gloomy rainy days. Tuesday was the anniversary of my mom’s death from ovarian cancer. What a difficult time that was for all of us in the family. Now I am exactly as old as my mom was at that time, and I also am struggling with a serious condition. I’m noticing again some of the things that we dealt with during my mom’s illness: friends and family saying hurtful things, distancing themselves, and trying to make the illness seem trivial. If anything is said at all, it is so superficial or cliche that it reveals a total disengagement. What is up with that? It’s almost as if they are lacking in… empathy.

OMG!! Guess what hit the market this week? Empathy cards! The exact cards that call to the heart of every person struggling with a serious illness, and the life preserver for every person who just doesn’t quite know what to do or say. I can relate to these cards totally! These cards are created by Emily McDowell to fill that huge gap that too many of us are aware of where people of good heart and intentions struggle to acknowledge unhappy truths (some of us will never be old…) as they try to express their concern and support. Here’s what I’m talking about:

See what I’m talking about? One visitor told my mother that her terminal illness was a “remarkable opportunity” as it gave her the chance to plan the end of her life. I never allowed that person to come visit her again. People who say everything happens for a reason are smugly assuming that somehow your illness was something that you deserved (and they didn’t), or that it will somehow make you a better person. That is just wrong, folks.

Lemon Card — This happened to me! Not nice!

I bet you want some of these cards too. Here’s Emily McDowell’s blog about these cards and her store where you can buy your own. Emily is a cancer survivor and definitely understands the problem and the need for these simple vehicles to scaffold caring and meaningful communication of support for others dealing with a hard time. I know that people do care. We all need help sometimes to know how to show others how we feel.

So what other empathy cards should there be? I personally am tired of people telling me that they are glad that I’m so much better. (Say what??! I look better right now because I’m between naps and between crisis…) or that they will pray for me (Thanks! I appreciate that! What I really need, however, is someone who is willing to do some grocery shopping for me or even take me to my next major medical testing appointment of the gastroenterology torture chamber variety…) What about the times when people tell you that at least you don’t have __________ (some other disease that sounds worse to them), or ask if you have your will made? There has to be a great card using these comments!

Lots to think about while knitting on a rainy day.

Wednesday Update: Shawl, Sock, and a Rant

What a beautiful morning! My backyard filled with birdsong early and the cats began clamoring to be let out, so I got up, made a latte, and joined everyone in the early sunshine. It’s too soon for flowers (except dandelions which are now in full bloom!), but the promise of summer is there for the taking. My trees are blooming and there are little buds where the leaves are getting ready to burst out. It’s hard to not get a little excited.

I took advantage of the light to get knitting pictures. I finished a shawl over the weekend. Here it is:

Close up of shawl. — Here’s a close-up of the tip. There was a lot of color in the yarn!

Shawl on denim. — Here’s the shawl on denim. The colors look great combined with several things in my wardrobe. Yeah!!

Amazing yarn. — The original skein of yarn. It was a little intimidating with that “becoming art” label, but I’m happy with the product.

Now that I have one of the two shawls that I am working on finished I felt that it was OK to cast on the April 2015 sock. Here she is!

It was a really great week for me knitting-wise. I even coated myself with the best sunscreen on the market (SPF 60!!) and went out and planted my new roses. There were a lot of positives for the week except for… my scleroderma decided to kick my butt. My leg muscles now hurt, my knees have become swollen, red and warm to the touch, and I’m dizzy in the mornings. I have edema in my arms and legs. What is up with that!! My rheumatologist gave me some drug information to read (I get to pick which drug I prefer of two possibilities. This sounds pretty good, but during the week I realized that these are chemo drugs that I will be taking at a lower dose than cancer patients get. Bummer!) Still, I was having a happy week and being positive until one of my neighbors stopped by to talk to me while I was planting the roses, and he mentioned that if I would get out more often to exercise and get sunshine I would “get well”.

He meant to be encouraging. He’s really not all that bright; he doesn’t get “chronic”. I was polite, but once I got back into the house I was ready to rant. Don’t tell chronically ill people that they can “get well” if they just change their diet, get more exercise, meditate, get off gluten, take vitamins, or whatever else occurs to you. It’s almost like suggesting that it is their fault that they are sick. I know that while it is human nature to want people to “get well”; it is insensitive to suggest that this is within the power of the person who is dealing with a disabling, progressive and incurable disease.

On the other hand, I need to pick a drug. Once I calmed down I e-mailed the doctor to let him know that CellCept sounded pretty good. Some scleroderma patients in forums are claiming to be in remission. That sounds pretty good to me. The downside? No more sunshine for me until I’m off again.

Midnight gardening? I can do it!!

In Pursuit of Joy: Out of Control (Part 2)

Control is a thing that is highly over-rated. I was a classroom teacher and learned to just get over it. The art is to savor the chaos and to keep steering things along in the right direction while understanding that learning, successes and growth come at their own rate. Knitting, scleroderma, life: lay your best plans, hope for the best, but know that dropped stitches, hail storms, and bad lab reports are a fact of life. Surrender to joy when you find it, and don’t sweat the other stuff.

It’s been 6 months since my diagnosis for limited systemic sclerosis (scleroderma), and for the most part it hasn’t been all that rocky. I got through the first round of medical testing with only three hospital bracelets, my doctors were nice and mostly informative, and some of my symptoms have subsided thanks to the immunosuppressents that I am on. New symptoms have appeared, however, and some surprising results showed up in routine blood work drawn two weeks ago. (OK, I was surprised. Now that I think about it, this is why there was so much medical testing 6 months ago. My rheumatologist was probably expecting this…) Even through I was warned to stay off the internet (really, they thought that would work?), I pursued the possible causes for the test results and went to PubMed to find out if there was a correlation with my symptoms, the test results and the auto-antibody profile that I have.

Well, crap!

OK, now I have a list of specific questions to ask the rheumatologist when I go see him next week. The internet can be a scary place, and sometimes ignorance is bliss, but I think that it is best to tackle these things head on so that I can make informed decisions. Still, I was a sad puppy at the start of the week which was one of the reasons I cast on new projects that facilitated smooth knitting and a zen like calm. Three projects at once? Sure. It’ll be fun!

Yesterday I decided that it was time to fight back; I packed up my purse, my knitting, and headed out to find some joy. Where can these things be found? At the local nursery and my favorite yarn store, of course!!

Look at the plant that I found! Happy, happy colors. I bought this and a cute little cyclamen in a hot pink.

Then I headed off to Colorful Yarns in nearby Centennial, Colorado where I knew ladies gathered to knit together on Wednesday afternoons. Oh my goodness, what a good idea that was. I had a great time knitting, was inspired by the yarns and projects of the other ladies and was even was treated to a decadent snack. (Rice crispy treats made with Nutella and drizzled with chocolate! Hello… if you are hunting joy, chocolate is always a hot ticket!! This recipe looks like what she made. Yumm!!) I made some friends and will definitely be going back next week. And the best thing? I was in a yarn store!!

No one should ever go into a yarn store while facing down mortality-related issues linked to their health status! Ever!! You can predict what happened here…

There was a whole section with newly-arrived cashmere blend yarns. Oh dear. — There was a whole section with newly-arrived cashmere blend yarns. Some with sparkle. Oh dear.

Green Yarn — I had never heard of this yarn label before. Hello, beautiful. This yarn is to dye for!! It is cashmere/silk/merino, and if ever there was a yarn that wanted to become art, this is it.

Blue yarn — Same label, but all merino. Won’t this make a happy pair of socks? It’s hard to see in the picture, but the colors just glow.

Cofetti Yarn — It is not possible to walk out of this store without some Zen Yarn Garden. This is 20% cashmere, and the colors are happiness guaranteed. This colorway is called confetti. 🙂

Yarn Haul — Here is the entire yarn haul hanging out with me while I eat lunch outside with my cat MacKenzie. How much fun (and out of control) is this? You are looking at JOY, people!

Time to cast on even more projects!! It is time for me to knit, knit like the wind.

This is me spitting in the eye of scleroderma.

February 28: Rare Disease Day

I got a newsletter in my email box yesterday that let me know that this special day was upon us. Wow. A day just for me and the other people who have to explain their medical status to friends, family, and medical providers such as the dentist. Wait, it isn’t for me? It’s for my disease? Since systemic sclerosis is an orphan disease that no one has heard about this day is set aside to introduce it to everyone. Isn’t that special! Ta-da! Everyone, please meet scleroderma!

What is a rare disease you ask? Well, that is a good question, isn’t it? Off to the internet I went to find the answer.

In a nutshell a rare disease is one that affects very few people. Most of these are genetic, or at least have a genetic component, but there are some others such as the autoimmune disease that I have that also fall into the category. According to the Rare Diseases Act of 2002 a rare disease is defined as one that affects less than 200,000 people in the United States. Since the Scleroderma Foundation estimates that 100,000 people in the US have systemic sclerosis it meets that criteria. Oh, I guess that’s why they sent me that information in the email.

I’ve been kind of thinking about what this means in practical terms. If I tell someone that I have scleroderma (thinking that I have a better chance that they might know something about it since the systemic sclerosis that I have is a subtype of scleroderma), they get a blank look on their face and say that they’ve never heard of it. The next thing that happens is understandable, and very human, but also unfortunate: they immediately assume that the illness isn’t very important since they never heard of it. The conversation moves right on to something more understandable.

My hairdresser told me a story last month that haunted me for days. Her step-daughter had a number of autoimmune conditions that included fibromyalgia, IBD, and something that affected her joints. She had extreme fatigue. She kept trying to talk to her father about what was happening to her, and how fearful she was, but he discouraged conversation as he thought she was “milking the situation for attention.” She died at Thanksgiving, and he is being eaten with remorse. What a mess. Her condition was mostly invisible to an outside viewer, and since he didn’t know anyone else with it, he incorrectly disregarded the impact it was having on her.

Depression and a feeling of isolation is a big issue with rare diseases. Most of them are chronic, they can be progressive, and there is no cure. Once the diagnosis is made the patient begins living an unpredictable life with an uncertain future. Without a strong support system it is hard to deal with this stuff on a day-to-day basis.

There are a lot of rare diseases, (this site has a database if you are interested), so no one can be expected to know a great deal about any one of them in particular. If you should encounter someone who has one, however, it would be nice to ask them some questions and then to really, really listen to their responses. What is it? How are they coping? And if this is a good friend or a family member, what can I do to help?

To all my peeps with chronic conditions (hey, lupus girls, I am talking to you!!), knitting friends and those of you afflicted happily with bibliophilia, I have one thing to say:

Happy Rare Disease Day everyone!