Tuesday, February 02, 2016

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. 

Thursday, July 02, 2015

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!

Wednesday, June 10, 2015


    (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.

Monday, February 02, 2015


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.

Thursday, December 11, 2014

A Christmas Without Knitting

I have been knitting for 30 years.

I have been knitting Christmas gifts for 29 years.

Or, rather, I have knit Christmas gifts for the past 28 years. This year, for the first time in over a quarter-century, I am not knitting a single gift.

If you are a knitter, or if you know me, you know this is A Big Deal. Christmas knitting is as much a ritual of the season as trimming the tree and leaving cookies out for Santa. The planning, the dreaming, the anticipation of the recipient's delight. Thinking of that special person as I knit miles of ribbing. The clever hiding places that I stashed that knitting if someone walked unexpectedly through the door as I was working on their gift. Casting on one last pair of mittens on December 22, because they would look great with the hat I had made. The tense race to have that last project cast off by Christmas Eve. These have been a huge chunk of my festive season for most of my life.

I love my Christmas knitting. It allows me to be generous with those I love without feeling that I've given in to commercialism. It gives me a sense of connection with my gift and with the season. I have always considered it one of the best parts of Christmas.

But not this year.

Now, this was not originally the plan. I spent much of September perusing Ravelry and Knitty and the hundreds of magazines accumulated over the past 30 years for inspiration. October was spent considering yarn, rifling through my stash or ordering the perfect yarn. Early November saw the rolling of balls of yarn, the casting on, and long, lazy evenings of knitting. I knit a couple of scarfs for
a puppet show. I was rolling nicely along on the gifts, with more in the planning stages. Then my
thumbs stopped working.

Stopped working. Not "got stiff". Not "started to hurt". Stopped. Working. Did not move. Locked. Both of them.

Okay, I had been pushing through a bit of a flare, but I wore my compression gloves and my wrist splints to protect the joints. Sure, there was some stiffness in my hands as I worked, but the gentle rhythm of knitting tends to work the kinks out and get those stiff fingers moving. But this was different. My thumbs were painful, swollen and frozen at a strange angle. I decided that I needed to take a day or two to rest. I called all the various assorted doctors and physiotherapists, making appointments for the earliest dates they had (between a week and a month into the future). I looked into different knitting styles, hoping that I would find one that was more ergonomically friendly to stiff thumbs. I discovered just how much everything in human life depends upon having opposable

Eventually, the pain eased. My left thumb started to move, then my right-though that one still won't bend at the top joint. Everyone, from the orthopaedic surgeon who fixed my broken wrist years ago to my current rehab team, has told me that knitting is good for stiff joints, so I picked up my knitting again. There was a mild sense of panic in the back of my mind about the fast approach of mailing deadlines, but I knit on.

For about half an hour. And my right thumb stopped again. Just stopped.

I finally got in to see my primary care physician this week, and he was full of bad news.
Anemia, bursitis in one hip, advanced osteoarthritis in the other, deterioration in my lumbar vertebrae, and something with the charming name osteitis pubis. And that was before he looked at my hands.

It didn't take him long to determine that something is wrong. The prime suspect is de Quervain's tenosynovitis, but also in the pool are bursitis and osteoarthritis. There will be x-rays and MRIs and a visit to the rehab team before the culprit is revealed, and that will take time, especially at this time of year.

So, long story short, there will be no knitting for a while.

I feel like I just got a stocking full of coal. I am struggling with the idea of not Christmas knitting. Not because the gift bit is important, but because it has been such a part of my celebrations at this time of year for so long. Because knitting has been so much of my life for so long.

I will rest, and I will take the anti-inflammatories, and I will find other ways to celebrate the
season. I know I will continue to feel as if something is missing, as if Christmas is not quite right. But I also know that, if I rest and recoup this Christmas, I can knit next Christmas. So, I will bake and buy my gifts and spend time with those I love

And start planning next year's Christmas knitting.

Tuesday, October 28, 2014


Resistance, as the Borg say, is futile. This, however, does not stop me from practicing it, especially when it comes to my Rheumatoid Arthritis.

It's been a year since I was diagnosed and I still find myself fighting with both the disease and my self. I've worked hard over this past year to accept the limitations that have been put on me by this disease.  I'm not doing as well as I could be, because I am resisting.

I liked my life the way it was. I was busy and productive. I spun and knit and wove. I taught and wrote. I cooked fancy meals and gardened. I socialized and entertained. I did things. Lots of things. Sure, sometimes I got tired or stressed, or some part of me hurt, but I was living up to my model of a busy, accomplished human in the 21st Century. I was strong and bold and accomplished.

Things have changed drastically in the last couple of years. I just can't keep up that pace anymore, as much as I wish I could. Limits have been imposed. Limits not of my own choosing. My fingers are not quite as nimble as they once were. Chronic fatigue has cut both ends off of my days by making it harder to get up in the mornings and easier to fall asleep in the evenings. Pain and stiffness mean every task takes so much longer than it used to, and side effects from my medications make me groggy and fuzzy-headed.

In spite of all of this, I soldiered on, keeping up the hectic pace of my old life. I have had to work harder to keep it all going, but I have kept it. I have talked big talk about letting go of this task or focussing more on that job, but I haven't actually done it. I have been trying to resist changing. As long as I am resisting, I can tell myself I am fighting and holding on to a normal life.

But two things have become very clear to me lately. The first is that this disease is not going to go away and I had just better accept my new limits. The second is that putting a pretty face on pain and illness and suffering of any kind hurts not only the person who is suffering, but every one. Openess and honesty do not mean you are weak and whiny. It means you are accepting life as it is. It is the lie that all is well that does far more harm.

So, the time has come, the walrus said, to speak of many things. About change and acceptance and moving forward. About saying no and setting reasonable expectations. About being honest about my disease and the impact it has on my life. It is time to stop resisting and to understand that acceptance does not equal defeat. About admitting when I hurt and slowing down.

It is also time to talk about tiny triemphs. About finally finishing the sweater that I started in January. About my wonderful vacation in California over the last two weeks. About living life, in spite of pain and fatigue, even if it is not exactly the life I had planned.

Moving forward, I want to write more, about my disease and about fibre and about life, starting here on this little blog. I am not changing my blog from a fibre arts blog to an RA blog, I am opening up my focus to include the realities of my life as a fibre artist with RA. There will be more stories about pain and disease and medications, but there will be stories about fibre and making really good yarn, too. I hope that those of you who have been reading all along will come along for the new journey.

Let's stop resisting together.

Friday, September 26, 2014

RA 101

Okay. I think that if I'm going to share my stories with you, it's only fair that I offer you some perspective on what these stories are about.

One of the first things that I learned about Rheumatoid Arthritis is that most people don't actually know what it is. There are misconceptions, even within the medical community, and confusion with other forms of arthritis and even with other diseases. So, to get us started off, I offer a basic primer on Rheumatoid Arthritis (RA).

RA is a chronic, systemic auto-immune disease. What this fancy phrase means, basically, is that the immune system goes haywire and starts attacking healthy body tissues as if they were disease agents like bacteria or viruses. This happens most frequently in the fluids that serve as cushions between the bones in our joints, but can happen to other tissues in our bodies, including our heart, lungs, eyes, and digestive organs. It is not just a few achey joints, it is a disease of the whole body. And once your immune system goes awry, it never goes back. The primary result of this malfunction of the immune system is inflammation, typified by swelling, heat, and pain in the affected area. Or areas. RA very rarely hits just one spot, but rather goes after multiple joints and organs.

Other body functions are affected, too. Most people with RA have malformed red blood cells, or far to few of them, leading to anemia. This, along with the chronic pain and the fact that your body is basically expending all its energy fighting the invasion of an enemy that doesn't exist, leads to chronic fatigue. The swelling of the joints also means that our body movements are thrown way out of whack. leading to all sorts of muscle aches and pains. Some RA sufferers also have other illnesses that piggyback with the RA, such as fibromyalgia, chronic tendinitis, Crohn's disease, or Sjogren's syndrome (the inflammation of salivary glands and tear ducts), which compound the pain and fatigue.

This is a lifelong disease. There is no cure.

It is estimated that between .5% and 1% of the population have this disease, making it relatively rare, but RA can attack anyone, at any time. The usual age of diagnosis is between 20 and 50, but children (including my own daughter) can have it and I recently met a woman who was first diagnosed at 72. This disease strikes predominantly women, but men get it, too. There is no known cause, though there have been recent studies that suggest a combination of genetic and environmental factors as the trigger. The symptoms of RA vary from person to person, and from day to day in each individual. There are days that I feel pretty good, then I wake up the next morning unable to bend my fingers without crying.

This is the biggest problem with having RA-the unpredictability of the thing. No one knows who will get it, when they will get it, which of the symptoms they will have, or when and where those symptoms will strike. This unpredictability makes treatment more or less and experimental process. There is no cure, but there are treatments that can reduce the symptoms and slow the progress of the disease and mitigate the damage done. Sadly, though, there is no way of knowing which treatments will work for who until the treatment is given. And all of the treatments come with problems of their own. All of the know treatments for RA focus on suppressing the immune system, which opens a whole other can of worms. Then we add in the side-effects that come with strong medicine, from dry skin to nausea to death.

In other words, this ain't no picnic.

For me, RA has shown up as inflammation in 57 of the 60 joints counted for assessment. (My elbows and my left knee were inflammation free and have stayed that way for almost a year.) I have inflammatory tendinitis in my shoulders, hips, wrists, and ankles. I am battling costochondritis, the inflammation of the cartilage in my rib cage. I also have Sjogren's, which means my eyes are constantly dry and red and my mouth is so dry that my lips stick to my teeth.

So, now you know what I'm facing. I lived for 50 years with relatively few major health issues, then, WHAMMO! This thing hit me like a freight train. I had a life I liked, making things and teaching others to make things. Travelling and gardening and eating good food. Good friends, wonderful family. A good life. A life I do not want to give up. As I said in my last post, I am weaving the ends of that life into a new cloth, building a different life on the foundations of that old one.

The first step, in every journey, is acceptance.

For more information about RA, you can go to: