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!!

Plant
This kalanchoe is moving into the bedroom to keep me company in the mornings while I drink my latte and read in bed. (Oh, I am so retired!)

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.
Yarn
Gradient dyed yarn! I have to make a lace crescent shaped shawl (with beads) out of this yarn. There was a striped hat set in matching colors that will let me make a hat and mitts in the same colors. How can I walk away from something like that? Black winter coat, you never had it so good!!
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

rare disease day
Logo courtesy of Rare Disease Day. To find out more information about this event visit http://www.rarediseaseday.org/

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!

The Art of Serendipitous Phenomenology

When I used to work in a medical research lab one of my co-workers described what we did as mastering the art of serendipitous phenomenology.  I think that he meant that we (hoped to be) alert, observant, curious and reflective about events around us. Big discoveries can occur from chance observations if one pays attention; one of the famous ones is Alexander Fleming’s discovery of penicillin. Another of my coworkers discovered an important immune system inhibitor (which led to a patent and eventually a drug. How cool is that?) Of course, there aren’t any big scientific discoveries in my life right now, but I have had a run of fun occurrences lately. It’s been making me think about serendipity, and that perhaps one of the secrets of finding joy in every day living is in mastering the art of serendipitous phenomenology.

So, here is my run of fun;

Starbuck's Card
I went into a strange Starbucks Sunday on an impulse while picking up Chinese takeout. I needed a new Starbuck’s card as I had just lost mine. Look at what I found!! The hard-to-read text on the left says, “Year of the Sheep”.
Book.
I was in a slump this weekend because I had just finished a good book. I forced myself to start reading the next book on my list, and it’s a science fiction with the title of WOOL!!  It’s a really good book, too. How much fun is that?
Yarn
Serenity 20 sock yarn by Zen Yarn Garden. The colorway is Jewel.

I was already contemplating serendipity when I arrived at my favorite local yarn store yesterday. I had a hazy notion that I wanted to get a cashmere blend yarn that would look nice with grey to make another Hitchhiker (by Martina Behm). Going through the sock yarns with a friend a skein suddenly fell out of its cubby and landed on the floor at my feet. “Well, there’s your yarn”, said my friend. There it was indeed! This yarn is 20% cashmere. The color is perfect for me and my new grey sweater. After going through all the yarn we could not find one that was a better fit.

Hey, who am I to argue with the universe? This yarn is clearly destined to  become a Hitchhiker. The answer to Life, the Universe and Everything. Obviously I needed to buy this yarn.

See what I did there? Even though this yarn was expensive I was able to absolutely justify buying it with my smoking post-Christmas credit card.

And that is the Art of Serendipitous Phenomenology, my friends.

 

 

Life is Uncertain, Knit Fast!!

Yesterday was Thanksgiving. A time to be thankful for the good things in life. I have always thankful for good health in the past. This year, for the first time, that wasn’t true.

There can be no doubt about it. Things hadn’t been quite right for a long time. My joints hurt. I had a rash on my face. I sometimes had trouble swallowing, and acid reflux was occurring on a regular basis. My hands were swollen and I had trouble moving my fingers. Fatigue was my constant companion. If my hands got cold my fingers turned white or purple, a condition called Reynaud’s. Sometimes it hurt to breathe. I kept thinking that if things got worse I would go to the doctor, but I never became so sick that I could justifying taking off work. As many people with chronic conditions do, I just made adjustments and kept going.

Then, without any warning, my digestive system rebelled in a big way over the course of one weekend in early May. Colitis? You have got to be kidding me! Feeling pretty uncomfortable I kept close to home and worked on landscaping projects outside, read books, and worried. After two weeks I contacted my doctor.

Tests were ordered. Everything was negative: there was no obvious infection. Relieved, I decided to just give things a little more time. There was one test result that did nag at me, however. My renal function was a little low.

Two weeks later, lying on the couch with aching legs and abdominal discomfort, it finally hit me. I have a rash on my face. My knees hurt. I have Reynaud’s disease. I have a low renal function test result. When tested in the past I had a positive ANA (anti-nuclear antibody) test. This sounded like one of those cases presented at the weekly seminars when I worked in a rheumatology research lab…

Alarms went off in my head. Lupus! I called the doctor’s office and scheduled an appointment for an exam to be evaluated for lupus.

Lab Tests
Good grief! This is how much blood was drawn to do my rheumatology testing!

“How is it possible that you haven’t already been diagnosed?” my doctor asked me.  How indeed? Oh yeah. That adjusting and just keep going thing. She ordered a huge battery of tests for a comprehensive rheumatology screening, and told me no more gluten in case it was celiac disease. I was horrified. Celiac disease! I wasn’t prepared for that! “Celiac disease would be good,” she said. “We can treat that.” Believe it or not, at that moment celiac disease seemed like the end of the world. I left her office in a sad condition and counted the number of tests ordered while heading down the stairs to the lab. Twenty-two lab tests. Yikes!

Over the next week the test results slowly trickled into the patient portal where I could see them.  Everything was coming back negative. Because of the rheumatology research lab job, I had some idea about which antibody test results were linked to lupus. The big lupus markers were all coming back negative. I began to convince myself that I was a big over-reacting baby. Then suddenly a note came from my doctor telling me that she was sending me to rheumatology for a consultation and three tests I hadn’t seen before appeared in my inbox on the patient portal. Positive results for auto-antibodies associated with scleroderma and Sjogren’s Syndrome.

Pills in case
Look at the great pill case that my sister sent me to help me keep track of all these meds!

At the end of August, 2014 I was diagnosed with both of these disorders and my new rheumatologist started me on medications meant to slow down the progress of the disease and to treat the symptoms that I already have. Eight prescriptions and three over the counter medications!! I have the type of scleroderma that is referred to as limited systemic sclerosis (CREST). This is not good news.  I already have significant skin tightening on my neck, face and hands, and my digestive system has been impacted, but my heart and lungs are doing OK. In a strange way,  however, I feel lucky. Very, very lucky and thankful.  This Thanksgiving I continue to be thankful for what I have. I have been diagnosed, I’m on medication, I am retired and have time to knit…

This is just part of the yarn stash...
This is just part of the yarn stash…

Well, isn’t that a bitch! Here I am in possession of a world-class yarn stash, and I have a rare medical condition that may leave me unable to knit. The skin is getting especially tight across my right hand…

Luckily I am a master of adaptation. That whole adjust and keep going thing has prepared me for an event just like this.

Time to knit fast. Knit very fast! Just cast on and don’t look back.

Enjoy your gluten. 🙂

Knitting in the Key of LIfe

“Now, let us all take a deep breath and forge on into the future; knitting at the ready.” – Elizabeth Zimmerman, The Opinionated Knitter

The last four weeks have been terribly hectic for me. I’ve been fighting a chronic condition for some time now, and in May it decided to get ugly. My wonderful doctor ordered a huge battery of tests, and wouldn’t you know it, I tested positive for an autoimmune condition. “Good to be diagnosed, but also a shame,” my doctor tells me. Things have been busy for me as I’ve completed batteries of additional tests, visited new doctors, driven to new clinics, and started new medications. Huh. It’s like I’m starting a whole new life.

How best to respond to a body blow like this? Obviously the thing to do is to stay calm and knit! I have knitted though all the crisis of my life. I knitted a new sweater the week that my mom died, made a pair of socks while sitting in the ICU with an ill son, and created an afghan while recovering from surgery. Stranded in an airport for two days? No problem, I have knitting! Knitting can sooth and center me in a way few other things can. I feel calm, hopeful and pleased to be creating something of beauty and purpose during the process. Cheapest therapy around!

So, I made a pair of socks for my sister’s birthday present the week I was diagnosed.  I then started a big project for one of my friends (a cushy vest that she can wear to Colorado Avalanche hockey games),  and bought the yarn to make little purple mitts with owls on them for my grand-niece who just had hand surgery to repair a badly mangled finger. Still, I needed more. I needed to make… a cat!!

My cousin loves all things cat. We saw this meme that has been making it’s way around Facebook that shows a box of kittens with the  “Crazy Cat Lady Starter Kit” stenciled on the side.  Of course she asked for a starter kit of her own. Of course I started looking for a cute pattern to knit a cat. This pattern by Kath Delmeny fit the bill.

Knitted Kitten
First kitten in the “Starter Kit” crate. We’ll have to get a larger crate as I add kittens!

Here it is. Cutest cat ever! I finished it today (on her birthday) and I couldn’t help posing it all over the yard.  I’m so pleased with how spunky it is, and can’t help but imagine that it will be a little rascal that gets up to no good once it’s at her house.

Kitten in Flower Pot
Doesn’t this look like a kitten that will break house rules?

Why do I knit? Because it makes me feel wonderful!

That’s the best medicine ever.

“Knit on, with confidence and hope, through all crises.” — Elizabeth Zimmerman

 

Lessons My Mother Taught Me

My mom was amazing. She had a life that could serve as the foundation for a novel, but to me she was just mom. The lessons that she taught me were a reflection of her time, but they have turned out to be good life lessons for any generation. Here they are:

  1. We are all citizens of the world. My mom was born in Japan to American citizens of Swedish descent; her first spoken language was Japanese. The family lived overseas due to my grandfather’s job, and she was raised in Illinois and Argentina. Along with the English that she learned in America, she was also fluent in Spanish and had some French on the side. After marriage she lived in Hawaii and Southern California. She had a cosmopolitan view of the world and would not tolerate any prejudice of any kind. If she didn’t like someone, it was absolutely personal. Lesson learned.
  2. People are more important than money. My parents valued service to others and the nation above making money. My mom was a nurse and my father was in the civil service. They gave as much money as they could to charity; one year they were in the newspaper because they had donated so much to The United Way. My mom was a pediatric care nurse when I was young, and she fostered some of her patients who needed homes after leaving the hospital. She always gave 10% of her income to her church. We weren’t rolling in money but we always had enough. I learned from mom that you don’t need money to be rich.
  3. The most valuable thing you acquire in life is your education. My mother was admitted to a university after finished high school, but her father wouldn’t let her attend. When I wanted to go to college myself she moved mountains to make it possible for me, and then entered college herself. We raced to graduation with mom finishing a few months before me. She told me we were making the best investments of our lives, and she was right. Cancer cheated her of her Master’s Degree, but I thought of her the entire time I worked on mine. The diploma on my wall is hung next to her picture. Thank you, mom.
  4. Get your vaccinations! My mom was a Red Cross nurse during the polio outbreaks of 1945. It was a dreadful time. She was a nurse at an outbreak in Illinois where hundreds of people became ill, and many died or were left with lasting damage. When the polio vaccine became available we were some of the first to receive our shots. She worked on the pediatric ward of a county hospital and saw many children die or suffer permanent injury from “childhood” diseases such as measles and diphtheria. Throughout her life she insisted that we get every vaccine available as soon as we could. To this day I regard vaccines as one of the greatest achievements of science.
  5. Take germs seriously when it is appropriate, but don’t worry about them the rest of the time. Wow, we learned draconian germ control methods when there was an outbreak of illness in the house. Safe food handling was a way of life for us. Otherwise, things were pretty casual. She kind of felt that your immune system needed to see germs to develop normally, and mom would have laughed at all the anti-bacterial products on the market. I have to say, I very rarely become ill. Mom knew what she was doing.
  6. Repurpose, recycle, reuse, and eat your leftovers! My mom was a child of the Great Depression. She did her homework writing in the margins of the newspaper. She invented Life Hacks before anyone else knew about them. She knitted, sewed, cooked, and made all of our presents. She empowered me to learn how to sew baby clothes, can peaches, tape drywall, lay tile and make plumbing repairs. This is also why I can’t seem to throw away all my biology teaching stuff in the garage. I just KNOW I can use some of it again for SOMETHING.
  7. It never looks how long it took you to do something, only how well you did it. Usually this was said as I ripped out a zipper to sew in for the third time. I think she meant it to comfort me, but it was really good advice. Don’t ever settle for less than your best.
  8. Feed your roses every month, prune them every three months, and if they don’t produce the way you want them to after a year, rip them out and go get some new ones. Mom took her roses seriously and her roses were amazing! People came off the street, knocked on her door, and asked her about them. I remember them as 6 feet tall and always blooming (OK, this was San Diego and such things were possible). When you think about this, her advice for roses is also good for life. Sometimes, no matter how much love, care and time you spend on someone or something, there comes a point where you should cut your losses and move on. You leave that job, your marriage ends, best friends get downgraded. That’s life, mom would say. Move on.
My mom in 1986. She died of cancer a few months later.
My mom in 1986. She died of cancer a few months later.

My mom died 28 years ago this week, but her lessons live on. It is not possible to minimize the effect that she had on my life. Her lessons grounded me, and I’m still trying to live the example that she set for me. She surrounded herself with books and read every day. She established a scholarship to allow a woman to enter the ministry, created nursing courses to meet the needs of her community, and wrote her congressman when she wanted action. She was a woman of faith who demanded evidence before she made a decision. She has been and continues to be the role model for my life. I love you, Mom!

Happy Mother’s Day!

Duct Tape Story

I really like duct tape. I always had a roll in the classroom, and used it for emergency repairs, to anchor equipment in labs (like the bases of Bunsen burners) and to cover electric cords on the floor and tables. I used it to build hanging shelves for plants in my greenhouse. I repaired textbooks and lab notebooks with it. I would caution students (in jest, of course!) that I had duct tape, and I wasn’t afraid to use it! With a small tool box and duct tape, there isn’t much that an enterprising biology teacher can’t handle.

Smart Bed
Me working with a student on a temperature and pressure sensing “smart” bed. See all the pink duct tape?

I came out one day at work and discovered that my car had been hit on the bumper. I put duct tape on it and that was that.

A few years later, pushing my cart to the collection area in the parking lot, a woman stopped me. “That man just hit your car!” she said. Yep, he had. The crack on the bumper was now much bigger. The man who hit me was still there so I confronted him. He was an African, spoke with a British accent, and was pretending that he hadn’t hit my car. “Don’t lie to me”, I said in my best teacher voice. “If I walk to the front of your car I’m going to see the paint from mine, so just admit that you did it and apologize!” He did. Looking at his earnest, apologetic face, I suddenly saw my refugee students from Mali, Congo, Burma, and Sudan reflected in his manner and voice. One of my best friends, an immigrant from Nigeria, would kick my butt if I caused this man trouble. I thanked him for the apology, and when I got home I put on more duct tape. That crack was now much larger, but duct tape was on the job!

Backing out of a parking spot at Best Buy a few weeks ago I suddenly hit something. You guessed it, there was another car backing out at the same time and we were in each other’s blind spots. The bumper was now completely crushed in. No amount of duct tape would fix this! It had to be repaired. The other party, a visibly shaken up elderly woman who had been parked in the handicap spot, could hardly communicate with me. I found myself comforting her and telling her it was OK; since her car was undamaged, I would just take care of mine and we would call it a day. I decided to pay for my car repair out of pocket since it was kind of a no-fault deal, and I needed to get it repaired anyway. The repair was an economic blow at a bad time, but how could I make an insurance claim when the bumper was encased in old duct tape?

So I asked the auto repair shop where I should take my car to get it fixed, and took the car to the local shop they recommended. The girl in the office seemed strangely familiar: she was a former student! Yeah! The business was owned by her father, and she worked there in the office. She was the only person there who spoke English well.

Students Collecting Data
Students collecting data in hands-on lab about respiration.

Aside: I taught Sheltered Biology one year, and she was a member of that class. All of those students were non-English speakers and many were refugees trying to cope with a crash landing into our culture, struggling to learn a new language, and finding biology, a subject area that uses a new vocabulary every 6 weeks, a definite challenge. Students huddled together, shared visual materials, copied from each other, utilized lots of body language and built shared support books. We did lots of hands-on activities, labs, and watched video after video. It was the best of times and the worst of times.

There was lots of discussion in Spanish, parts were ordered, and the crumpled bumper part was removed. We agreed that I should come back the next week to have the new part installed.

Today I arrived at the collision repair shop, nervous about the cost, and discovered that there was a problem. The broken bumper part had disappeared somehow and the red reflector and the mud flap were missing. While the shop workers searched for the missing part, there was a phone call from the paint store. When the part had been taken there to get matching paint another shop’s employee had mistakenly taken it with them to Boulder (a city 45 miles away!). It had just been returned. Amazingly, this stranger had taken the time to return the bumper before we even realized it had gone missing.

Half an hour later the wandering bumper piece was back. The beautiful new bumper with perfectly matched paint was on my car flashing its reflector and mud flap like a pro. Stumpy (my car) looked great again! I turned to my former student and asked her how much I owed.

“Oh, we’re not charging you for this”, she said. “You’re my biology teacher!”

Teaching: the gift that keeps on giving! As I drove away with tears in my eyes I reflected on duct tape, kindness, and how I am connected to so many people over distance and time through this little car bumper. Car injuries often bring out the worst in people, but with a little caring and duct tape you can find that people are essentially honest and kind. What a lucky, lucky person I am.