Immigrant Story

Today is St. Patrick’s Day. It’s kind of a fun day here where I live. People wear green, there are parades, bodies of water (and beer) get dyed green, and there is some serious partying that can occur.

I’m Swedish-American, so I don’t really get wrapped up in the whole wearing of the green thing. In fact, when I was in grade school kids would pinch me black and blue on St. Paddy’s Day because I wasn’t wearing green; the teacher would give me a little green shamrock to pin on my dress so I would be safe. People acted like this was normal, but it made me a little cranky, to be honest. Why was it OK for me to be pinched because I wasn’t like the other kids? Why did I have to pretend to be Irish when I wasn’t even a little bit?

I knew I was Swedish. We had stinky lutfisk at Christmas and really great cookies. I didn’t foist lutfisk on anyone else (if you’ve ever been exposed to this stuff, you will understand that only the worst of the worst should be bullied with lutfisk…), or even share my cookies, so why should I have to wear green? I was Lutheran and the Irish kids were Catholic. The Jewish kids had candles, dreidels and chocolates instead of Christmas. It was all good in my eyes; everyone was an immigrant as far as I was concerned.

Years later I gave my grandmother a blank journal and asked her to record our family’s story. Wow. As it tuns out, it is a pretty good one, so I want to share it with you.

Anderson Family Portrait
The Anderson Family in America. From left to right: my grandmother Irene, her father John Alfred, her sister Alphild, and her mother Selma. My grandmother Irene was the first person in her family to be born in America.

My great-grandmother’s story is one that is not all that unusual; she came to the USA as a young women, worked in service, met a young man at her church, married, raised a family, and had a good life. My great-grandfather’s story is the one that I want to share.

John Alfred Anderson (known as Little Al) was brought to the USA by his parents when he was 4 years old. I’m not completely sure of the date, but it would have been 1862 or 1863. His mother died soon after they arrived, and his father returned to Sweden leaving the children behind. Little Al was left with an older, married sister and his brother was adopted by another family. When he was 11 years old his sister could no longer support him and he became a child on the streets of Chicago. He was on his own during the Great Chicago Fire and lost his most precious possession, his bag of marbles, when he buried it for safekeeping on an island in the Chicago river. To make things worse, Little Al was a Swedish child, and there was prejudice against Swedish immigrants; chances are he did not speak English.  The odds were not in his favor.

Believe it or not, it all worked out. He became active in a Lutheran Church and was supported by that community. He somehow came to the notice of Julius Rosenwald, the great Jewish philanthropist, who “helped him acquire his engineer’s license and then hired him to provide the steam-power for the sewing machines in one of Mr. Rosenwald’s garment factories”, as my grandmother related. My grandmother remembered getting a new coat twice a year from Mr. Rosenwald; he would have her mother come to the factory to pick out the fabric and he would personally select the lining and buttons. Later in life Little Al became a citizen, started his own business, the girls grew up, they both married, and they all lived good American lives.  There were amazing adventures later on in the family, but those are other posts.

When I said that I was Swedish-American, that was the literal truth. I’m half Swedish (on my mother’s side), and on my father’s side my ancestors have been here in America for over 300 years. They settled in the original colonies along the Atlantic coast, fought the American Revolution, and lived during the time when our constitution was written and the USA was born.  They eventually left the coast, crossed the mountains, and settled in a western wilderness known as Tennessee; their story is truly an American one. But each branch of my father’s family all started as immigrants, every single one of them.

Today immigrants are under attack here in America, and there have been numerous bomb threats and instances of disrespect directed towards members of the Jewish community. People are confronted for speaking a foreign (non-English) language or for dressing in clothing that reflects a different culture or religion, and they are told that they should go back to “their country”.

We are a nation of immigrants. My mother’s family here in America was saved by the kindly intervention of others and by a man of a different heritage and religion who reached out to help him. Just as it was not OK for me to be bullied as a child for not being Irish, or for others to insist that I needed to pretend I was Irish, it is not OK to marginalize or discriminate against others who are different from us or who are just now arriving on our shores.

My father’s family fought so that this would be true.

This is our story.

This is America.

 

 

 

The Scleroderma Chronicles: My Second Year Report

Well, here I am at the end of my second year since my diagnosis of systemic sclerosis, a life-threatening form of the autoimmune disease scleroderma. Last year I blogged about my illness: I had come through the worst of the grief and horror at the initial diagnosis, had made my way through some scary incidents that sent me flying across town to emergency centers, and was pretty upbeat about where I was in the progress of the disease.  I was sick, but I hadn’t developed any of the most serious, life threatening complications. My heart and lungs were fine. I had just been started on some serious immunosuppressant drugs (the same ones that are given to kidney transplant patients), and while they are risky, I had been told that they could really make a difference in my 10 year survival rate.

Hey, you roll the dice and you take your chances.  No sense worrying about the unknown future. I drugged up and slept like a baby at night.

Star Trek Meme
The Kobayashi Maru test, as all Star Trek buffs know, was a no-win scenario;  it was meant as a test of character. Systemic sclerosis, an incurable,  progressive, disabling and potentially fatal disease, can  also be considered such a test.

Ready to hear about my second year? Let me give you a hint: buckle your seat belt, because we are in for a bumpy ride.

  • November-December: the drugs begin to kick in and as they beat my immune system into submission my skin starts to harden up. I hurt everywhere!! I can hardly bear to comb my hair. The place where my flu shot went in hurt for weeks afterwards.
  • January: I caught the flu. Talk about insult to injury! Here’s the short version: antibiotics, off the immunosuppressant drugs so my body’s immune system can fight back, and then trouble breathing, chest pain, heart palpitations, and a partridge in a pear tree. What a mess! The month passes in a blur.
  • February: I’m still pretty sick and struggling to breathe. I get bounced back and forth between doctors as the debate about the root cause of my symptoms rages. I begin to pressure my doctors for answers and there is much testing. Oops. All is not well with my lungs and my heart is accruing damage. I get sent to a pulmonologist and she give me an inhaler to help me breath. She also tells me I am in serious trouble and refers me to palliative care. The doctors increase my immunosuppressant drug dosage.
  • March: Why, hello, Sjogren’s Syndrome. We forgot all about you! In the concern about my systemic sclerosis, the bad boy of my autoimmune twosome, everyone forgot that I also have Sjogren’s Syndrome, another serious autoimmune disease that causes dry eyes and mouth. As it turns out, it can also cause small airway disease (think never-ending asthma attack) and it has pushed me into chronic respiratory failure. Hello oxygen machine. You are my new best friend.

    Oxygen machine
    My new best friend!
  • April: new lung scans are back, and while I am diagnosed with interstitial lung disease, it appears that it is only mild. Huge sigh of relief!! There is also consensus that my pulmonary hypertension has not advanced. Both of these diagnosis, while still early and mild, are very serious, and the decision is made for palliative care to continue to follow me. Bummer!
  • May-July: Sunshine! Heat! Burning muscles, aching joints, gastritis, dizzy, dizzy, dizzy, and I notice that my lips are blue. I’m on oxygen 24/7 by the end of July.
  • August: my internist changes my meds to bring my heart rate up, and suddenly I have enough oxygen. The heart palpitations stop and after more testing I come off the oxygen. The 6 month Sjogren’s-driven asthma attack is finally over.
  • Quilt and socks
    Summer quilt and socks for my poor hurting feet.

    September-October: why does it hurt to walk? What is up with my feet? And this whole barfing in the middle of the night is getting downright annoying… My internist tests me to see if I have an H. pylori infection.

  • November: Well, doesn’t this beat all. The H. pylori test came back negative and I am diagnosed with gastroparesis. The muscles of my stomach are too damaged by systemic sclerosis to work correctly; the damage is irreversible. I start eating a very limited diet of soft foods and dairy. Ironically, I can now eat jelly donuts, but not fresh baby carrots. I’m losing weight anyway.
Little Greenhouse
The gastroparesis diagnosis hit me hard even though I kind of  knew it was coming. I stopped to get a little cheer-me-up on the way home.  Check out the little greenhouse I put together for the kitchen window. As always, MacKenzie had to help out with the picture.
Flowers
Here’s the flowers. Aren’t these cute? They were sold at the local nursery to put into “Fairy Gardens”
cat
and how could I resist adding the little cat and the mushroom? Those plants are miniature Kalanchoe that should eventually bloom again.

See, a bumpy ride that is still going, but a year that was also rich in gifts. Palliative care forced me to face the future with more courage and to make end-of-life decisions for my family and to start cleaning out my house of junk. I talked to family about my medical power of attorney. I enlisted one of my doctors to manage the medical team and I began to feel more in control of my basically out of control disease. I began to knit gifts for those I love with a purpose: everything now is a piece of me. In my mind the shawls that I am making for everyone I know are the “Good-bye Shawls”. I am on fire to make as many fingerless mitts for other scleroderma patients as I can. At the end of the day, this year was not one of struggle and heartbreak as I dealt with the endless march of a disease that has no pity or remorse. Rather, it was one of care, giving, creative fire, good friends, and the meditative peace of knitting.

Okay, I do get cranky at times, and there has been some crying.  I get short with annoying salespeople because it is so hard for me to shop. I told my ex-husband I was tired of hearing about his “stupid-ass”  motorcycle. I yelled at the cats. I hate when people say, “Well, you look great!” in a way that suggests that I’m not really all that sick at all. I wish that they were there to hold my hair when I hobble to the bathroom at 2am to throw up that nice meal that I hopefully ate but couldn’t digest. There. I got it off my chest, and I feel much better. Aren’t you relieved to hear that I can be petty and mean from time to time?

Tomorrow is Thanksgiving Day. You know, it is easy to focus on the day: travel, turkey, family and the descent into wild Christmas shopping. Sometimes we forget the history of this national holiday; thanks for a good harvest and the blessing of probable survival through the coming winter. It is also a time to reflect on the bounty of the last year and to be grateful for the gifts it brought.

In spite of all the bumps of the last year, I am grateful for all of the gifts I have received.

Happy Thanksgiving everyone!!

Rocking the Week #7

It was a really busy and productive week. I already wrote two posts about parts of it (finishing the dishtowels and the cause of bad, bad kitties), but here is the rest of the highlights of the week.

Mitts and Markers
Sorry for the quality of the picture. It’s cloudy outside but you can still get an idea of the glorious color of these mitts. While I was weaving this week I wished I had light weight mitts that hugged my wrists and stayed put above my knuckles while I was working. Here they are! My project notes on Ravelry are here if you want to make a pair too. 🙂 I also made stitch markers from some of the glass beads that I bought at the Interweave Yarn Fest a couple of weeks ago.
Cat and Mitt
I also got the first of the Snowfling Mitts finished (well, except for the top of the thumb…) this week. These mitts also are lined so there is a lot to still knit, but I am happy with what I have so far. I love that Purple Dragon colorway!! Here are the project notes.
Yarn
On Wednesday I went to knitting and discovered that the store had gotten in a big shipment of Madelinetosh. My friends helped me a little too much as I hunted for yarn for a new shawl. I’m so happy with my “Waiting for Rain” shawl that I am going to make another in the grey, and the colored yarn was too nice to leave but is still waiting for its calling. That shawl pin goes with both colors. Maybe I can make the pink shawl have lacy ruffles that will stick out under the grey one so I can wear both shawls at once. I’m drowning in possibilities here, people!!  Feel free to make suggestions for the pink ruffly shawl…
More Yarn
Then my friends convinced me that I had to make an Exploration Station with these colors…
Plastic case
and then I found this little plastic case to carry knitting essentials. It has all of these little compartments to carry stitch markers, cable needles, sewing needles, etc.
Folded Case
and it all folds up into one tidy little package. Just amazing!! Just what I need. It was hard to buy only one of these…
Grandson as an Ant
Yesterday was Earth Day, and I went to my grandson’s performance of Goin’ Buggy at his school. Isn’t he the cutest thing as a Red Ant?
Flowers and Chipotle
On the way home I stopped by the nursery and got these flowers to put out front (it was Earth Day!!) and bought a burrito bowl at Chipotle. While I was eating I noticed the picture on the bag. Say, what? Soldiers, helicopters, buckets of fish?? How unusual…
Chipotle Bag
Then I turned the bag. There is a story here for sure, I told myself. Yep. On the other side of the bag I found this story about a young child eating his last dinner before leaving a refuge camp for America. It just brought tears to my eyes. You can read the essay by Fue Xiong called Two Minutes About Sardines here.

What an end to the week. This refuge/immigrant story just meant so much to me. Over the years I have taught many refuges to this county, but during one of my last years in the classroom I taught all of the “sheltered” biology classes at my high school. “Sheltered” classes are for students who are acquiring English as a second language, and the students are all mixed together. They were from Somalia, Congo, Mali, China, Myanmar, Peru, Syria, Mexico, Viet Nam, you name it. They were all a little shell shocked, earnest, hard-working, respectful and determined to survive. They were caring and supportive. They learned English and biology from me, and I learned so much more from them. I still have some of their labs and writings. They all made me a better person and appreciative of how many things I have that would be easy to take for granted. Earth Day, indeed.

What a nice end to the week. A special morning with my grandson, a great lunch and some food for my soul at the same time.

Have a great weekend everyone!!

Trail of Crumbs

I have been struggling for weeks and weeks now. I had the flu not long after Christmas and it just never completely went away. I have a pain in my chest, a cough, fatigue, and I just run out of air more easily than I should. Seriously. I have trouble talking and breathing at the same time if I come up the stairs at home. This isn’t reasonable. I was having trouble climbing stairs before I got sick, but now things are ridiculous!

This is the joy of life with a serious chronic illness. There are so many little symptoms and problems it is hard to know what’s important and what is just another day of systemic sclerosis. I tend to wait out symptoms for a couple of weeks before I contact a doctor; then I’m at the mercy of waiting for lab results and a call back. Ugh! Things drag on for days and weeks as I process through my medical team asking them to find out what is wrong with me.

Cat
Mom stays in bed all day reading mystery books that feature a librarian and a giant Maine coon cat. What is up with that?

For two months I have been bouncing back and forth between my rheumatologist and my internist. My rheumatologist has been concerned that my heart is misbehaving (and sends me on to the internist), and the internist suspects that my lungs are to blame (and refers me back to the rheumatologist). It’s like following a trail of crumbs hunting for answers to an ill-formed question. No test result provided a clear diagnosis.

Except I can’t breathe, and it seems to be getting worse.

Two weeks ago on my way home from my weekly knitting group I was hit with a surge of assertive self-determination. Time to stop acting like a victim, I told myself. Instead of going home I drove for another hour north and requested a full copy of all my medical reports from the hospital where my pulmonary function and echocardiogram tests were done. I knitted on my shawl in the lobby while waiting for the reports, and then took them home with me in my knitting bag.

Shawl
Look at this shawl! I’m through the first section of short row lace. This is the Waiting for Rain shawl by Sylvia Bo Bilvia.

I am a lucky, lucky woman. I have a molecular biology degree and I once worked in a rheumatology research lab. I taught advanced placement biology for years and I know a lot more anatomy and physiology then the average patient with my condition. I should be able to follow the trail of crumbs within the stack of medical records, I reasoned. I laid out the lab reports in sequence, looked for patterns of change in my lung and heart test results, and took to the internet to understand what strange acronyms meant. I found a presentation that explained pulmonary function tests. Well, dang. Even though the summary notes from the physicians who interpreted my lab test used words like mild, early, and upper range of normal, it was clear to me that my lungs were getting worse over time. Maybe a lot worse.

I emailed my rheumatologist a note telling him that I had picked up up my tests and saw that my results suggested early interstitial lung disease (the summary of the latest test). I reminded him of my symptoms and asked about next steps for me in addressing/diagnosing my ongoing problems. Here’s the deal: an email is part of my official medical record. More than a phone call, it should provoke a response.

Oh, it did! I received a call within an hour from his office. In the next week I had two phone conferences, another echocardiogram, and a referral to a pulmonologist. I was able to refer to specific data in all of my conversations with my doctors. I got a prescription for a badly needed rescue inhaler. Finally! Forward progress!!

Yesterday I saw the pulmonologist. It was a beautiful warm day and a perfect drive through the countryside to get there. What a wonderful, wonderful doctor! She made it clear that I am not over-reacting, I do need better coordination of my health care, and she will be a warrior for me. I wanted to hug her. Here’s what happened during the visit:

I do have interstitial lung disease, and it is serious; almost 20% of my lung volume is already gone. This is bad news because it happened while I was receiving drugs to treat the systemic sclerosis. I will be completing more tests over the next week to nail down the diagnosis, but there is already so much damage that she will coordinate immediately with my rheumatologist about treatment options; she sent him the message while I was still in the office. I think that I will be seeing more/different meds in the near future. I may be going on oxygen overnight. I hope that I don’t have to do IV infusions. I have been referred to palliative care and will be receiving a case manager to help me locate resources and to coordinate my ongoing care with the medical team. I plan to ask the case manager if I should be referred to a scleroderma specialist at the University of Colorado, but I totally want to keep this pulmonologist!!

After so much time trying to get some answers/help the response was actually overwhelming. I came home and for the first time since I was diagnosed I cried.

Welcome Bear
The front yard “welcome bear” could still be seen between snow drifts when I went out to shovel. Cute, huh!

Today I woke up to a full-blown blizzard; howling wind and almost 2 feet of snow! I didn’t get any calls about medical appointments and I certainly didn’t make any. I knitted, shoveled snow (slowly!) and enjoyed the break from the immediate crisis. I started the next book in my mystery series. I worked some more on my shawl; it is going to be beautiful.  My roses are safely enveloped in an insulating three foot drift of snow.  I was able to successfully advocate for myself and secure medical treatment. Tomorrow the sun will be back out and I will start scheduling appointments.

This is not the journey that I would have chosen for myself, but I will travel it as well as I can, knitting, reading and tending my roses all the way.

Life is good.

 

Rare Disease Day

Today was Rare Disease Day. I woke up with notes in my email box reminding me that this was the big day. Oh, yeah. I guess I should say something about it on the blog, but what? I mean, I do have a rare disease, but why should anyone else care about it?

rare disease dayI spent most of the day thinking about that. I worked on the loom (weaving is right around the corner!), cleaned the house, cooked a yummy dinner, and pondered the relevance of rare diseases throughout the day. For a while in the late afternoon I almost started writing, but ended up knitting instead. Now it is evening and I think that I might be there.

You see, anyone dealing with a chronic condition eventually comes to terms with their altered life. Grace under fire becomes the status quo. We deal. We lean in. Maybe the big success of the day was taking a shower or getting dinner cooked, but by golly we did it!!

If you have a rare disease, it is a little harder yet. People have never heard of your condition. Your doctor may have never treated another person with your disease before. Your friends and family sometimes suspect that you might be an attention-seeking hypochondriac. You wander the internet looking for answers. There is little research being done for your disease because so few people are impacted by new drugs or treatments. In a world with finite funding for medical research it makes better sense to put the money where the most patients are: cancer, diabetes, heart disease, asthma. I get it.

The purpose of Rare Disease Day is to shine a little light on the many, many conditions that are classified as “rare”. It is also a campaign to raise some awareness about the human impact of being a patient with one of these conditions. To be frank, it kind of sucks!

stuff
Fat swollen fingers with thick stiff skin are part of my condition. On this day I accidentally triggered a Raynaud’s attack that cut off the circulation to one of my fingers. 

You see, rare diseases are also referred to as “orphan diseases”. You do feel like an orphan. Alone, alone, all alone. I’m lucky to be hooked up with other people who share my condition, but that is because I live in a large metropolitan area. I have systemic sclerosis*, which is considered the most severe of the diseases in rheumatology. There are only 100,000 of us in the United States (which, if my math is right, is 1 in 50,000 Americans), so if you live in a small town chances are you will never find another person who has the same illness that you do. I am lucky.  I belong to a support group and have found online resources, the most important of these being you people who take the time to read my blog.

Here is what I decided is the most important message that I should put out on this day set aside for me and all the many, many other people who deal with a condition/illness that no one has ever heard of before. If someone says, “I have (crazy-ass disease you’ve never heard of before)”, don’t say, “I’ve never heard of that!” in a dismissive manner as you turn away. Say instead, “What is that?”  Invite the person that you are talking with to teach you about their unusual condition. Really, it will mean the world to them.

They will feel less like an orphan if you do.

*Systemic sclerosis, which is serious form of scleroderma, is an incurable, disabling, and progressive autoimmune disease that causes inflammation and scarring of the connective tissue of the skin, blood vessels and internal organs. It is often fatal, but in recent years the survival numbers have improved due to new therapies (I love my immunosuppressants!). Currently there is no drug to directly treat systemic sclerosis but there are drugs and treatment strategies on the way. Right now there is a bill in Congress to fund scleroderma research called the Scleroderma and Fibrosis Research Enhancement Act, H.R. 3666.

The View from Here: One Year of Scleroderma

It’s been a year since I was first diagnosed with scleroderma. Actually, it has been decided that I have the form of scleroderma called limited systemic sclerosis (the disease formerly known as CREST). Sounds kind of fraught, huh. That’s because it is; no matter what I think I know about my condition this week, by next week things will probably change. It has been quite a journey this year and now that all the dust has settled from the latest rounds of medical tests I wanted to share my thoughts.

There is no question that the first months after my diagnosis were filled with waves of horror and grief. At first I was just stunned to discover that I might lose the use of my hands. Then it dawned on me that my ability to live independently might become problematic; I needed to make plans to activate a support system for myself at some time in the future. Eventually I found out about the fatal complications and the high mortality rate. Well, shoot. During this time I became a driven knitter: endless pairs of fingerless mitts rolled off my needles.

CARD
My sister, who has a somewhat warped sense of humor, sent me this card about the time that I learned about my risk for pulmonary hypertension, an often fatal complication of limited systemic sclerosis.

Yet, it has been a year and I am still here. I sailed through the medical tests and none of the frightening medical complications have manifested themselves. My lungs and heart are fine (huge woohoo!!). My GI tract hasn’t gotten worse. My hands are very swollen and the skin is getting hard (one of the hallmarks of scleroderma is hard skin that forms due to lots of collagen deposition and scarring; my arms and legs are getting hard too), but they work just fine and are actually much better than they should be. My rheumatologist has advised me to knit as much as possible; what a hardship!  Other symptoms have improved and I have transitioned onto a battery of drugs that have good track records for improving the quality of life and increasing survival rates in patients with my condition.

So, what have I learned this year? Here is my reflective collection of observations as I look back from the one-year viewpoint:

  • People are more important then things. Period.
  • ..but they just don’t get chronic conditions and they tend to underestimate the seriousness of conditions that they can’t directly observe. In general people on crutches or using oxygen activate concern, but if you have flaming gastritis, the dizzy wobblies, and your muscles are on strike it’s easy for them to adopt a dismissive attitude. <sigh>
  • Medical personnel can be appallingly insensitive. Last week the technician doing my lung scan mentioned that I had a lot of doctors because my disease was really rare; it was important that the doctors get to learn as much from me as possible. Good lord, I wondered. Maybe she was raised by wolves…
  • As a corollary of the above observation, I have also discovered that I can’t assume that the medical personnel that I come in contact with actually know about my condition. One nurse thought that “systemic sclerosis” was “multiple sclerosis”. A doctor gave me a pep talk about how other conditions were worse because some of those patients actually can die from their disease. (“Did you want to hit him?” asked my rheumatologist…) One thing I can count on, however, is that they will put me into some scary machine to look for a possible blood clot. What is up with all the blood clot hunts?
  • MedAlert ID
    I do have some wonderful doctors! Because of crazy interactions with random medical people I have decided that it is best to be proactive: last month I put this tag onto my keys and the little card in my wallet has the business cards of my internist and rheumatologist stapled to it. 
  • There are few things as empowering as discovering that you won’t live forever. Why sweat the small stuff when you are facing down the long odds? My drugs have a small chance of a fatal brain infection? Whatever. Hand them over, Sparky, I am on board! I never worry about money (bad when I’m in a yarn store) or running out of gas, and I am taking more risks than I was comfortable with before. I mean, what is the worst thing that can happen? This week I figured out how to identify all of the electrical circuits of the house and rewired and installed a new doorbell. I didn’t worry (more than once) about getting knocked on my butt by an electrical mishap. Ha! In my younger days I hated to even change light bulbs…
  • Stay Calm and Carry Yarn
    Elizabeth Zimmerman was right. “Knit on with confidence and hope, through all crises.” is a motto that I can live with.
  • No, I won’t be skydiving! I’m not that risk-seeking. 🙂
  • It is so much easier to be happy than sad. Plant flowers. Read books. Knit like the wind! Chase bees. Go to lunch with friends (and get dessert!). Watch meteor showers and be sure to catch the Super Blood Moon. Talk to strangers in bookstores and coffee shops. Be kind whenever you can. Never miss an opportunity to take a picture of a great sunset (or a cat). It is really, really easy to be happy, even when you’re in a crazy machine that is looking for blood clots. 🙂

I finally went to my first scleroderma support group meeting a couple of months ago. I’d never met another person with scleroderma; it was a little extreme but good. Like me, they all suffer from cold hands. Unlike me, most of them also talked about the struggle to manage pain in their hands, and I could see that several of them had limited use of their hands because the skin was so tight. Remember all of those fingerless mitts I knitted during the sad times? I think that I have found a home for them.

 

 

 

Liebster Award!

I was surprised to wake up a couple of days ago to find that Sharon of Creativity and Family had received the Liebster Blog Award and had nominated me to receive it also. For those of you who don’t already know what this award is, it is one that is designed to recognize and draw attention to smaller bloggers (in terms of the number of followers) who produce sites that you (the nominator) find helpful/entertaining/meaningful and would like to share with others. At the end of this post I will pass the baton to some of the sites that I follow and really enjoy. Sharon, thank you so much for nominating me. I’m really flattered that you thought of me.

As part of accepting the award I am asked to answer some questions that Sharon sent to her nominees in her original post. I get to pick 5 or more of her questions. So, with no further ado, here are her questions that I have selected and my answers.

  1.  What is your favorite crafting tool?

My knitting needles!! I have gone through a lot of needles in my time, but my absolute favorites are now Chiaogoo lace tip needles. I have a set of interchangable needles that I bought extra tips and cables for, several sets of cable needles, and and a set of double-pointed needles to match them. If I am just knitting a sock or mitt I use my Kollage Yarns square double-point needles. I love them so much I bought a set (or two) in every size I commonly use. I have zip-up Chiaogoo cases for them that I treasure.

Knitting needles
It really is the little things that count. I love these needles!! The cables of the ChiaoGoo are wonderfully flexable and the square needles are so easy on my hands I can knit for hours without my hands tiring.

2.   What is your favorite craft book

That’s a hard call. I went to the book shelf and hunted for the book that was the most worn and tattered. Here it it.

Book
This book is my go-to source for patterns when I need to make a hat, or mitten/glove. It is especially nice as it helps me use my handspun yarn.

 3. Do you have a project that you have made time and time again?

I have made the same sock pattern so many times that I have it memorized! It is the Chouwa sock from the book Knitted Socks East and West by Judy Sumner. No matter who I make this sock for, it fits!! I tried to make my sister something else last year and she just demanded another Chouwa. So there. If it isn’t broke, don’t fix it. 🙂

 4.  What is your favourite handmade gift that you have received from somebody else?

My cousin Cathy sent me a handmade quilt that I just treasure and use everytime I stay over at my son’s house. Next time I get hospitalized (knock wood) I’m going to have it brought to me because it makes me feel so happy!

5. Where do you sit to do your creating?  If possible could you share a photo?

Chair
This is the knitting chair! It is so big I can sit cross legged in the chair and during the winter I snuggle under a blanket while I work. Notice the nice big (cat-suitable) arms; the cats still insist on sitting on me (chomping yarn) or on the leg rest while I knit.
Sewing table
This is the sewing table and off to the right is the cutting board. Cats sit all over all of this too.

 6.   Have your creative hobbies changed over the years or do you stick to the same ones?

Knitting has been a constant for me ever since I learned around 8 years old. I’ve added in spinning, weaving, quilting, card-making and some bead work over the years, but the vast majority of my time is spent knitting. My spinning wheel resents this…

7.   What do you store your wips and take out projects in?

I live it fear of wool moths. Every time I attend a workshop lately I am warned that there are, indeed, wool moths in Colorado. I have a lot of fiber coming through my house…

Cat
and I wage a constant war to keep the animal fur in the house under control.
Storage box
I now store all my projects in these plastic snap top storage boxes. There is enough room in there to include scissors, patterns, extra needles, etc.
Storage
It’s really easy to stack and store them too!

That is it for my questions. It is now my great pleasure to nominate some of the blogs that I follow and enjoy. Please don’t feel obligated to accept the award, but if you do, there are some requirements that I have listed below. I hope that you will because I like your blog and I think that other people will to.

alexand knits

That Girl  at (Not) Another Lupus Blog

joeylynne28 at Tubie or Not Tubie

Princess Yarn

Orange Smoothie

Teal Brick Road

knitsbywhit

Knit Jubliant 

Monarenton

As an award winner you must:

  1. Acknowledge and accept the Liebster Award by leaving a comment on the blog where you were nominated.
  2. Copy and paste the Liebster Award medal (logo) onto your own blog.
  3. Link back to the blogger who awarded you and give thanks.
  4. Answer the questions put to you by the person who nominated you. This is a great way to get to know the people behind the blogs. The number of questions have vary from 5 to 11 depending on who is asking.
  5. On your blog nominate and link to your 5 favourite blogs (or more) that you enjoy but have a small readership (the rules have varied from less than 200 to less than 3000 readers). It could be that they have only been blogging for a short time or have a niche interest but are worthy of gaining more attention in the wider blogging world.  That means the blogs of large, commercial enterprises are not eligible for nomination; nor are blogs that are well publicised in a variety of media and established with tens of thousands of followers.
  6. List your questions for your Liebster Award nominees on your blog.
  7. Inform your nominees by leaving a comment on their blogs.

Some of the blogs that I nominated are written by people with serious crafting addictions (and not enough time to get to all of them…), others are blogging about their lives with serious medical conditions, and some blogs are by people with both of these things going on in their lives. 🙂 I tried to make questions that will fit the bill for people in either group; pick 5 or more of the questions that appeal to you.

  1. Why did you start blogging?
  2. Why did you chose the name of your blog?
  3. What are three of your very favorite books?
  4. What are the biggest challenges in your day-to-day life and how do you deal with them?
  5. What does your work (crafting) area look like? Pictures, please!!
  6. Are you hoping to make gifts for Christmas this year? Share!! (Please do this one. I need ideas…)
  7. What is your favorite (handmade) gift that you have received from somebody else?
  8. Where do you get your best ideas?
  9. Where do your creative energies go? What craft or activity is the most important to you?
  10. Have your creative hobbies changed over the years or do you stick to the same ones?
  11. What makes you the happiest?

Alpaca Summer Camp

Last week was a ton of fun! I helped out at a Camp Macusani, a summer camp run by Alta Vida Alpacas, which is also the site of Alpaca Partners, an organization “committed to creating quality with purpose in the lives of special needs persons through unique opportunities offered on the ranch.” Wow! Teaching, fiber arts, alpacas and a chance to be involved in something special that is making a difference in the lives of young people facing more challenges than most of us. Not only was this a lot of fun, but it was a special, special week.

So with no further ado, here is the week. 🙂

Alpacas
This camp started just as you would have thought: the kids went up the hill to meet the alpacas!! That cute rear end you see in the manger is one of the sheep.
Baby alpaca.
Of course there were babies…
Guard dog.
and dogs. At Alta Vida the owners (Dan and Cari Corley) have guard dogs and llamas in the pens with their alpacas to help keep them safe. Most of the alpacas in these pictures are huacaya, although with their coats clipped off it’s hard for me to be sure. The ranch also has suri alpacas.
Washed alpaca fiber
The actual fiber day started with the kids getting their own bag of alpaca fleece (huacaya and suri) to pick vegetable matter out of and to wash. Here is the washed fiber drying.
Flower hunters in a meadow.
While the fiber was drying we all headed out into the meadows on the property to hunt for Colorado wildflowers.
Wildflowers
and then the flowers were pressed to dry in phone books (with bricks on top to provide the weight!)
Combing alpaca fiber.
The next day the kids learned how to comb their alpaca fiber…
Solar dyeing.
and then they dyed some of the fiber using kool-aid and the heat of the sun. It was a beautiful hot day and the wool dyed great just using solar energy. The individual colors are contained in zip-lock bags, and then the bags were placed in aluminum cake pans with plastic snap-on lids. Slick, huh!
Making felt.
The white and dyed fiber was used to create felt art projects and also was blended to create rolags. Fun, fun, fun!
Felting is hard!
The downside: felting can be hard work. 🙂
Spinning yarn.
At the end of the camp students learned to make yarn. To break the process down to manageable “chunks” we had kids work with partners so that they could just control the spinning at the beginning, and then later they took over the drafting part of the process. Some were able to create yarn on their own using the drop spindle by the end of the second day.

Remember those pressed flowers? On the last day the dried flowers were used along with pictures taken during the camp to create photo memory books that the students took away with them. They also framed and made pictures using the felt that was created, and their yarn was steamed (to set the twist), wound and made into a little skein. Camp was only about 2.5 hours a day, but a lot was accomplished!

That’s why this was such a special week. By the family pizza lunch on the final day the kids had learned how fiber from live animals (that they learn how to take care of during the school year) is used to create items of beauty and purpose. Someday some of these kids will be creating items for sale in a farm store that will be operated by Alpaca Partners, and some of them may end up working with livestock later on in their lives. Things learned in this camp will be used in the two local high schools that currently collaborate with Alta Vida Alpacas to provide a unique educational opportunity for special needs kids; weaving and knitting with that yarn is a future possibility. If ever I spent a week well, this was it.

Oh yeah. I was also with my peeps!

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.

Century 16 Theater
This what the theater looks like today after an extensive remodel. I still haven’t gone there to watch a movie since the shooting.

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.
Gun magazines.
Here are the gun magazines. These slick and menacing productions are located on the lowest shelf where kids can sit and go through them, and I counted 30 magazines. I ignored the obvious hunting and gun collecting ones.

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?

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.

Joker and the Thief Shawl
The navy yarn is the “Thief”, and the color gradient yarn is the “Joker”. This shawl is fun, fun, fun to knit. The sections of garter stitch are separated by stripes of criss-cross stitches. It is going to be really nice and squishy to wear. Here are the notes on Ravelry if you want the yarn details…

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:

Empathy Card
I would love it if someone gave me this card. I would love it even more if that person really would punch someone for me! 

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.