Debris

This post has taken me almost two weeks to write. Or, more accurately, almost three months. I have an alarmingly long list of partial drafts stacking up on my dashboard, none of which will be likely to ever see the light of day as time goes on. And on. And on.

I have a perfectly valid reason for all of the false starts and delays over the past three months. I picked up a bit of a common cold bug while I was out on Salt Spring Island. No big deal. Except that I have a hyperactive immune system. So while my Incredible Hulk immune system smashed that wee cold before it even had a chance to get fully established in my sinuses, those pesky antibodies proceeded to smash a lot of other stuff too. I spent two months in full flare, pretending nothing was wrong and pushing through projects and trips and meetings. I've been feeling better for the past two or three weeks, but I am now in what I call "The Debris Phase." This is the point at the end of a flare where I discover all of the soft tissue bits that have been damaged by the swelling in my joints. Tendinitis, muscle strains, torn cartilage, odd pockets of fluid in big joints that make things a little unstable...all the debris left behind.

I have been here before, and I will be here again. That is the joy of chronic illnesses like Rheumatoid Arthritis. They ebb and flow. I have been ill long enough to recognize the cycles, and I know that after the Debris Phase comes the Feeling Great Phase and then the Overdoing Everything to Make Up For the Flare Phase.

This time around, though, I am noticing another kind of debris. I am seeing the emails that I never returned. The text message conversations that were left hanging. The bill payments missed. The birthday cards unsent. The half-finished weaving projects. The partially filled bobbins laying on top of half  braids of fibre. The blog posts stalled in the draft stage.

You see, while I thought I was "pushing through" and coping with my life, things were slipping through the cracks. Nothing major. A few bills that had to be caught up. I probably owe a few people a chat or a coffee. Nobody will die because I didn't notice these things while I was out of service.  But it scares me. I am at a juncture personally and professionally where SO MANY opportunities are presenting themselves. And I am afraid to take them.

The very worst debris from a flare is this fear that I can't. I can't be healthy. I can't keep track of bills and birthdays and blogs. I can't be reliable. I can't plan or risk or dream, because who knows when the next flare is coming.  How can I commit to a future when I can't guarantee that I can follow through with it?

I know this is simply more debris. I will clear it away and find my path again.

And now, a random picture of tulips...

... that I planted last fall, because they popped up this spring to remind me that I do get things done.

How Weaving Saved My Life

If you used to read this blog regularly (back when I posted regularly), you will know that about 4 years ago, after a relatively healthy life, I began a winding journey through rheumatoid arthritis and lupus. Coming shortly after my 51st birthday, with a busy teaching schedule and an exhibit in the works, the diagnosis was devastating. But nowhere near as devastating as the pain and loss of mobility, especially in my hands.

At the time of diagnosis, my rheumatologist was pleased to hear that I worked with my hands as a spinner and knitter. He and my occupational therapy team encouraged me to knit daily and spin as much as I could to keep my hands limber and my joints mobile. I gladly took their advice and knitted and spun.

But then, I started noticing little things going wrong. Some days, the swelling in my finger joints made knitting impossibly painful. Tendons and ligaments in my wrists and fingers would rupture suddenly. The tendons in my wrists would become so inflamed that I could not even bend my wrists. Odd swellings appeared on the back of my hands that blocked the movement of both fingers and wrists.
Each crisis was addressed. A series of splints and braces were employed and I soldiered on, knitting less, but holding out hope that things would get better.

Until the Christmas of 2014. I was deep into my Christmas knitting when my thumbs failed. Completely. To the point where I could not hold a cup of coffee, let alone knitting needles. I stopped knitting. I sulked. I moped. I didn't realize it then, but that was the beginning of a long spiral into depression that I only started climbing out of a few months ago.

After a couple of months of this, I was having a conversation with my daughter, who has battles of her own, about staying creative with chronic illness. She suggested I give weaving another shot, but I told her I was hesitant to do that because of the precision and control needed to make good cloth by hand. My hands couldn't handle the fiddly bits and my wrists are sometimes like solid blocks. I've tried weaving this way, and let me tell you, my selvedges would have made even the most relaxed and generous weaver weep.

But later, pondering upon our conversation, I remembered I had attended a talk about a style of weaving from Japan that was accessible to even the most handicapped of weavers. Immediately, the name of the style and the name of the weaver I had heard talk came to me, and I emailed Terri Bibby at Salt Spring Weaving to ask her about Saori weaving.

By no small coincidence, Terri happened to be preparing for a workshop at the Edmonton Weavers Guild, which was the closest guild to me at that time. So I signed up, not too sure what I was getting in to.

By lunch time on the first day, I was in love.

Saori weaving is usually tabby, plainweave. It is not about straight selvedges. It is not about regular patterns. It is not about perfection.

It is about finding the beauty in imperfection.

It is about being in the moment while you weave.

It is about weaving what you feel. Here. Now. With no concern about the end product.

It is exactly what I needed to be doing. Then, in those first dark days of my illness, and now.

I have been weaving in the Saori style now for two years. I have learned to embrace the moment and I have stopped mourning who I was. I have found who I am now. Perfectly imperfect. Messy around the edges. Unconstrained by expectations. 

I am joyful. 

Every day. 

I have no doubt that I would still be suffering from depression and fighting for normalcy if I had not started weaving this way. There are days when I am pretty sure the weaving is even easing the chronic pain caused by permanent damage to my joints. I can lose myself in colour and texture and not notice that my hip is screaming at me. I have reduced my dependency on opioid painkillers and embraced alternative healing modalities. I am living more gently. I have my life back. 

Today marks another milestone in my Saori journey. Today, I begin my time as Artist in Residence at Saori Salt Spring. I will spend the next 10 days exploring Saori, pushing my boundaries as a weaver and living for each moment, each throw of the shuttle. I'm posting this today to invite you to join my journey, here and on Instagram, where you can find me as @spindleprincess.

Silence

It's been nearly a year since I posted anything on this blog.  Getting back to writing has been a big priority for me lately, but I deliberately waited until today to post.

Today is Bell Let's Talk Day here in Canada. This is a day that happens every year, where the communications media corporation Bell Canada promotes talking about mental health to erase the stigma and promote awareness that mental health effects us all. I chose today to reopen my blog because, simply put, I took the past year away from it for mental health reasons.

A lot of things happened in this last year. Big things. Stressful things. Things about life and family and health and career. And I found myself, for the first time in 55 years, without words.

You could call it a writer's block, I suppose. But it was more than that. There was too much happening, and not enough. I couldn't organize thoughts, I couldn't face deadlines, I couldn't say the thing I needed to say in a way that others would understand. I talked and talked and talked and said absolutely nothing.

I was overwhelmed.

I shut down in a lot of ways.

I found myself in a new community, alone for most of the day, in a great deal of pain, with no one to talk at. I withdrew into my own small space.

Then, in that little, quiet, lonely place, I found peace. I understood that talking and talking and talking...or writing and writing and writing...were not what I needed to do just then. What I needed was silence.

I realized that when I was talking and writing, I was making words and thoughts for others.

So I took some time to listen to the thoughts in my head, the words that were for me.

I took more time to listen to others, too.

Of course, I did not shut down completely. I did not take a vow of silence. I still talked to family and friends. I still wrote articles and essays. I simply slowed the chatter in my mind, curbed the need to let that chatter spill out. I started to think more slowly, to contemplate  my words before I spoke them. Before I wrote them.

And I found a new voice. One that is kinder, one that is stronger.

I am starting to talk again. And I want you to talk, too. So, please, talk. Tell me your stories. Tell me your fears and your anxiety. Tell me what makes you mad and what scares you. I am ready to listen, without fear, without judgement.

I am ready to write.

(I make no promises that I will do so regularly, though!)

The Face of Facing Rheumatoid Disease

I have done it again.

Somehow 6 months have passed, without a single post to this blog. It's not that I didn't have things to post about. There have been trips and transitions and adventures aplenty. There has been spinning and weaving--so much weaving. There have been developments and changes and growth and frustrations and....all those things people blog about. 

I hesitate to call it "writer's block", but, really, that has been the problem. I have had much to write about, but each time I sit down to write, there is nothing. There is much to say, there just are not words to say it with.

But today, I have words. Today, I am inspired to write. Because today is Rheumatoid Disease Awareness Day. Today is a day to share and to write about the true face of rheumatoid disease. To write about the root of my writer's block.

                              

I am still relatively new to rheumatoid disease. This month marks the third anniversary of the sudden onset of the symptoms that led me to a rheumatologist and the eventual diagnosis of rheumatoid arthritis and/or lupus. Three short years, yet a lifetime.

When I was first diagnosed, I was told I had mild to moderate disease activity. That we had caught it early and that I could be in remission within 2 to 3 years with minimal treatment. Blood tests indicated that I fell into a category that required minimal treatment. That didn't seem too bad, though I did have to learn to inject myself with methotrexate, a chemotherapy drug with a rather frightening reputation for nasty side-effects. (It turns out I tolerate methotrexate quite well. Side effects happen, but they are mild.) But, hey, 2 to 3 years. I could handle that.

And then the circus began. I was referred to an education program, where I was monitored and trained by a team of physiotherapists, occupational therapists, and dieticians. A joint count was done, finding moderate to severe  inflammation in 57 out of 60 joints. After three months, it was determined that there was permanent damage to multiple joints in my hands and a series of splints were fitted for different joints and for different functions. X-rays and MRIs and nuclear bone scans became a thing I did. Monthly blood tests are routine now. Medications were tried and discarded, dosages were fiddled with. Blood tests levelled out, with little to no inflammation showing up, but my joint symptoms spread into my tendons. I now have chronic tenosynovitis in and around all of my joints, from the tiny joints in my toes to the big rotational joints in my hips and shoulders, and inflammation ateach tendon   insertion (called enthesitis).

I have symptoms in other parts of my body too. Shortness of breath and wheezing and even occasional crackling in my lungs. Hoarseness caused by the inflammation of the joints around my vocal chords. Chronic bursitis has developed in my large joints, and I get injections into those bursae every 3 months. I get dizzy spells that last for weeks, but are completely without any physical cause. I have bouts of fever, and every now and then I get a rash on my torso and shoulders. Headaches and fatigue are my constant companions. I have something wrong with my wrists that does not have name. The doctors all just call it "hmmm, that's weird".

This is my "mild to moderate" disease.

This past summer, I hit my biggest roadblock yet. I had to change rheumatologists when my first one moved away. The new guy was very thorough, and very kind. He told me that all of my indicators for RA appeared to be well controlled. But. My other symptoms suggested to him that I was still quite sick. That the tenosynovitis and the lungs and the headaches suggested an ra/lupus overlap to him. And that, bottom line, this was as good as it was ever going to get.  

Dosages were upped again to their safe maximums. But this is as far as they go. There are other drugs called biologics that may help, but my original diagnosis of mild-to-moderate and my new diagnosis of lupus keep me from qualifying for those drugs at this time under the protocols in place here in Alberta. The physios, the OTs, and my GP have all done a marvellous job of supporting me and offering pain management and joint protection. I am not well, but I am functional.

So this brings me back to that writer's block thing. My block began the day I was told "this is as good as it's going to get". It has taken me until now to realize that, at that moment, I lost hope. That I had been expecting remission within 2 or 3 years. That I was going to have to live like this for...who knows how long. And I stopped.

It has taken me 6 months to accept that pain and stiffness are just part of the deal for now. That there are ways to work with the disease, and to work around it. To truly understand the limits placed on me, and then to work with and around those limits. And to recognize that just because those specific limits exist, that my life is not limited. This may be my new normal, and while I may miss the old normal, it's really not so bad. I am learning what is truly important to me. And I am embracing it. I am moving out of the hopelessness and forward into...something new.

And today is another day. Today is the day to share my story. To show you the face of Real Rheumatoid Disease. That face can look like fear and frustration and hopelessness sometimes. But it can also look like resolve and courage and acceptance. It can look like the face of a warrior who has taken some time to study her enemy and understand her own vulnerability and choses to go forward into battle in spite of the dangers. It can look like a woman sitting down to write on a neglected blog to share her story and reclaim some of her power back from a disease that is misunderstood and undertreated.

This is my RD face. There are many, many others. Look on Twitter and Facebook today for the hashtag #therealrd and read their stories, too. 

Fibre Week and Beyond

Another Fibre Week at Olds College has come and gone, and once again, I have lived to tell the tale.

(For those of you who do not know about Fibre Week, a brief primer: Fibre Week is an annual celebration of all things fibre hosted by Olds College in Olds, Alberta, Canada. The centerpiece of the week is the Master Spinner/Master Weaver programming offered by the college, but the week also includes a short workshop program, a vendors' marketplace, fleeces shows and sales, and a variety of social events.)

I wear two hats at this event: Master Spinner instructor and Workshop Coordinator, so even before I got sick, Fibre Week was exhausting. Knowing this and taking my doctor's gloom and doom as a warning, I worked very hard for the week leading in to Fibre Week to organize myself so that I could conserve energy and reduce pain and impairment as much as possible.

And it worked.

I'm not going to say nothing hurt or that I didn't come home absolutely exhausted, but I did manage to drive there, shop, teach and visit, then drive home with stops to pick up furniture on the way. Much fibre was purchased. Many friends were hugged. I got to see the fashion show, which included this SAORI piece I made...

...and I had the privilege of teaching this really remarkable group of women...

The beds were hard and the food was abysmal, and there were details that we as organizers had overlooked that led to brief moments of stress, but the people and the fibre more than made up for the shortcomings. As they always do. This is why I go back, year after year.

This Fibre Week was a little different, though. Along with all the usual stress and chaos, I received a phone call on the Tuesday night that has, very literally, changed my life. My husband had been laid off from Keyano College, where he had worked for nearly 24 years, due to budget cuts and organizational changes.

I was pretty shaken by the news. I lost all interest in fibre and spinning and teaching at that moment, and just needs to be home with the partner I have shared my life with for the past 33 years. But then, after a good cry, a shot of Jack Daniels (okay, a double...or two), and a pep talk from a good friend, I decided not to pack my bags and rush home. Dealing with that crisis could wait-my husband, though in shock, was fine and we are not suddenly destitute, thanks to wise investments and a generous severance package. And I had a great class to finish teaching. There was fibre to touch and twist. I stayed and finished up my class, then had a meeting to start the planning for next year in motion.

The time and space between me and the news was probably a good thing. I did not get hysterical (after the initial panic, anyway) and, let me tell you, it sure took my mind off my disease! I left Olds feeling relaxed, with that exhausted but happy post-Fibre Week glow.

I've been home a week now. I'm busy getting ready for my next teaching trip, which is just 10 days away. And my husband and I have realized something. Something big. We can go anywhere, do anything. We are not so financially strapped that we need to find work tomorrow or starve. Our kids are grown and educated and responsible for themselves. We owe next to nothing on the tiny home we have loved for 20 plus years and only have 3 more car payments left. We are young enough to do almost anything, from farming to urban life to living on a boat for a few years.

We are free.

And the dreaming begins. 

So tell me. What would you do if you had the freedom to choose any life you wanted?

...because we're making a list!

Re-emergence

    (Image shamelessly stolen from RawForBeauty's Facebook page.)

It's been a while.

You see, I've kind of been going though some stuff. Heavy-duty stuff. Chronic pain, serious medications, physical impairment, crippling existential angst. You know, stuff nobody wants to deal with. Ever.

When I developed chronic tenosynovitis in my wrists and hands and I had to give up knitting, I felt like I had lost a little piece of my soul. So I've sort of shut down, closed myself off. Become a hermit. 

Because I was afraid.

Afraid that I would lose all the other things that I loved to do, like spinning and weaving and cooking. Afraid that without those things, my life would have no meaning. Afraid that I was exaggerating my pain or my disease (the medical term is "catastrophising"). Afraid that things would never get better, and continue getting worse. Afraid that doctors would not take me seriously. Afraid of what people would think of me. Afraid that friends would leave me if they caught a whiff of weakness or neediness. Afraid that I was not good enough anymore. Afraid that a disease had stolen my life.

Afraid that no one would read this blog anymore if I wrote whiny posts about how much rheumatoid arthritis hurts and how it is changing my life every day.

And, you know what? A lot of those things did happen. I had to cut back on the amount of spinning I do (and so a lot less worsted spinning!). And life did feel less meaningful. I was told that my pain couldn't be that bad, because it was "only tendinitis", after all. Things did get worse as the tenosynovitis spread through my body and I developed some fairly major bursitis issues, too, leading to more pain and some mobility issues. Some doctors dismissed me out of hand. Some friends simply disappeared from my life.

So I wallowed in my hermitage.

But some small spark kept me fighting. I just didn't realize how hard I WAS fighting until yesterday.

Today I see that when I cut back on spinning, it opened up more time for weaving. I see that my definition of a meaningful life is evolving, and different things give my life meaning today. I found a few compassionate medical professionals who verified that my pain was real, that it was indeed part of the journey through rheumatoid arthritis, and that there were treatment options. I have learned that moving slowly and cautiously still gets me from Point A to Point B, and that it gives me time to stop and smell the roses as I go. I have learned that doctors are fallible, and if one does not hear you, you just have to go to the next one and speak a little more clearly. And I learned that I really do have some pretty amazing friends, who love me in spite of my pain  and my newfound slowness.

So I'm beginning to see the last 6 months of my life less as a period of hiding and hermitting and more 

as a period of metamorphosis. I have been in a cocoon, buffering myself from the outside world as I grow into the new life I have to live. I am still changing, still struggling to accept limitations and alterations. I am having a hard time letting go of old beliefs and expectations. 

And here I am, slowly emerging from my cocoon, unfurling fragile and wet wings, hoping that they will be strong enough to allow me to soar. We shall see if I am ready to share my story and return to this blog.

I still have much to sort through, so bear with me. I am still learning what it means to live with chronic illness. I am restructuring my life, my entire world view. It's not easy, and it sure ain't pretty, but I'm tired of hiding and hoping it will go away. 

Let's see where the road leads.

Labels

How do you label yourself?

We all put labels on ourselves. Mother, architect, artist, nurse, accountant, teacher. Gay, straight, black, white, Christian, Muslim. Smart, sexy, socially awkward, efficient, funny, stressed. Sometimes we combine these labels, as in "stressed Christian accountant" or "efficient gay mother". 

Labels can be very effective in introducing ourselves to new people or situations: "Hi, I'm your new neighbor. I'm a dentist who likes to garden."  Resumes, social media, dating sites, the first day of school. These are all good places to use labels. They are markers that others can use to remember us and our role in their lives.

But what happens when those labels change? When your label changes from "wife" to "divorcee", from "doctor" to "retiree", from "general manager" to "CEO"? Does that change who you are. Does your value go up or down? Do you look different, feel different?

If we are lucky, we recognise that the labels we use to identify ourselves are not permanent. They are sticky notes we put on our foreheads for the comfort of others. But some of us begin to feel that the label is who we are. We can feel trapped by our labels, or wear them like armour. We can find comfort in our label, a sense of self. The label becomes our identity.

This is what happened to me. I was happy with my label. I was "fibre artist",  with sub-labels like "spinner" and "knitter" and "teacher". I was mother, wife, cook, gardener, writer. I was busy, smart, efficient.

Then I was diagnosed with Rheumatoid Disease. I became "chronically ill". I became a "patient". I became slow and sore and fatigued. 

These new labels plastered themselves over the old ones, obscuring them, and pretty soon I had no idea what I was. Who I was. 

I did feel different. My value did change, at least in my own mind it did. I felt that everything I was has been torn away from me by this disease. I tried hard to continue tonwear the old labels. I plastered a smile on my face and charged forward. The doctors and therapists all told me to maintain as much of my normal life as possible. So I did.

Or, rather, I tried to.

It became very apparent that my old labels and my new diagnosis were not going to be compatible. Even so, I fought to hold on to those labels for over a year. I tried to keep up the pace of travel and work and family involvement and art and socializing and gardening. It got harder and harder to keep up the pace, with side-effects from medications and deformities happening in over-stressed and inflamed joints. Fatigue became overwhelming and flares stopped me dead in my tracks for weeks at a time. 

Pretty soon, the labels by which I had lived my life became overwhelming. They became impossible dreams, or sticky tar pits fromwhich I could not escape. I felt like an imposter, wearing labels that were no longer mine.

I gave up.

I let go of those labels. I crawled into a little hole and stayed warm while the cold and dark of winter beat on my joints and my soul. I floundered without my labels, not sure who I was and what to do.

Then, slowly, I realized that letting go of those labels did not mean I had let go of who I was. No, sir. Instead, letting go of those labels set me free to be whoever I wanted to be. I can still be a fibre artist without being a knitter. I can still be a mother without being efficient. I can still be a gardener, even if my hips won't let me bend over some days. I am adapting old skills to new tools and techniques, as an artist and a person.

I also began to see that my new labels did not limit my existence. Being a patient does not mean I am at the mercy of doctors and instiutions, it means I am part of a team working to make my life better. Being chronically ill does not mean I am an invalid, it simply means that I have to live one day at a time and embrace each day for what it is. In some ways, the new labels have given me much more power and confidence than the old ones ever did.

I am not my labels. I simply am.