Friday, 19 August 2016

The update a long time coming....

It's funny (peculiar, not ha-ha) how a disease can initially just take over your life, then your life becomes the disease, then you hammer out a more-or-less comfortable truce with said disease. I am SO fortunate that I got immediate help and that the drug therapy is working. Directions in my life changed drastically, but I have found new niches that actually harken back to my childhood and young adulthood. I can no longer racewalk, but I still hike whenever possible, although I am a slow old mountain goat. I had been studying Iaido, but was forced to let it go as my neck and shoulders couldn't handle the wear and tear. I did, however, find other ways to celebrate the culture of swordsmanship, as can be seen at one of my other blogs,  (I really like the concept of beauty in everyday objects). I had to give up playing harp as my shoulders and hands couldn't handle that. However, I've plunged into an old love, puppetry and film-making, using a lot of the harp music I composed and recorded years ago. You can check out my most recent stop-motion comedy (don't worry - it's only 10 minutes long) here:  [I guess I should warn you ahead of time that I have a rather "unique" sense of's been suggested that I will always be ten years old.]
I won't lie to you - I was pretty depressed each time a door closed on something I loved to do, but I guess the takeaway message here is that you may have to dig pretty darned deep sometimes but there often is a way to bring out the joy in doing things by taking new or revised paths. Believe it or not, without being struck down with RA I may not have found my way back to other joyful aspects of my being that had been put on the back burner years ago. Life's kind of strange sometimes, no?
I want to thank everyone who has been following my journey and just wanted to let y'all know that I'm still around, alive and vigorously kicking! It's unlikely that this blog will get updated again for quite a long time (as is probably evident), but I intend to leave it up in case others are going through the same whitewater that I navigated.

Monday, 3 November 2014

Hasn't got the better of me yet....

Long time since an update, I know. Things are still in a bit of a state of flux as far as my disease goes, and the meds are still being tweaked and balanced and shuffled to get something resembling a form of clinical remission. It really is a disease of incredible ups and downs - I post that I'm doing great things (and I am - a wonderful train trip to California with some hiking on the coast, lots of work with the telescope, Iaido on a regular basis) and then things crumble away for a while and new "wonderful" little symptoms are added in to the mix. Still, read the title of this post. I do at least 30 minutes of cardio every day (mind you, it's walking or biking), not just for my physical well-being but also for my mental state. I also do flexibility and stretching exercises. I'm still not comfortable in this new body, even after a year and a half, probably because it changes so much on a regular basis; I feel like whatever state I'm in is always temporary.

I have been sewing with my machine - very interesting sword bags and kinchaku (traditional Japanese drawstring bags) from vintage kimono silk that I've been getting from Japan. They really are nice, if I do say myself, and have been quite popular with the folks at the dojo. Here are some examples of the sword bags:

I have also found a couple of new things that help me with various facets of my new physical reality. I've tweaked my bike with a new set of handlebars to help my wrists and shoulders as well as a new seat for my hips so I can actually ride outside now, not just on my indoor stationary recumbent; so my bike is ready just in time for the winter weather, LOL! But we did buy a bike rack for the car so this should expand my exercise choices a bit.

The drugs I'm on mess with your weight quite a bit, so I'm constantly vigilant when it comes to gain or loss. I have to be; every pound of extra weight puts four pounds of stress on my already stressed hip, knee and ankle joints. There is a great scale that really helps in this area, the CalPal Digital scale. You set it up with a user profile (we've put two into it, one for Mike and one for me and they both work great) giving height, gender, age, and activity level. It then recognizes you when you step on the scale and can show any loss or gain since the last time you stepped on it, calculates your BMI and shows the calorie intake necessary to maintain your current weight based on your user profile. You can then use this information to plan weight loss or maintenance. I really like it, and it has a very pleasing sleek, modern look:

I highly recommend this scale!...(and it's an incredibly good deal at Amazon, too: $35! Absolutely can't go wrong at that price!).

Guess that's all for now. I go back to both doctors next week for infusions and to have a lot of stuff checked, like blood glucose, etc., so hopefully I'll post when all that is done!

Sunday, 29 June 2014

Great Lakes Chamber Music Festival 2014

It's been a crazy but extremely rewarding couple of weeks as we took in the 2014 Great Lakes Chamber Music Festival, subtitled "In the Shadow of Bach". My own little Warhol-esque art-take on the festival above is actually a pretty apt representation of the wide-ranging character of this year's Musical Offerings (pardon the pun). There were 20 concerts offered, but really only 14 that any one individual could attend as some were at the same time at different venues; we attended 12 of them! We had to travel quite far for most of them, crossing an international border every time for all but one; average travel time was about an hour each way. Honestly, it was worth every minute in the car. Only one performance was disappointing, a combination of a composer I really don't like and a sub-par performance by one of the musicians. That's quite incredible when the sheer volume of performers and performances are taken into account! Rather than dwell on the one little negative, I'll share some of the highlights (for me). In order of performance:

1) Roberta Gary's complete "Art of the Fugue" on organ. This 80-year-old legend gave just the right balance of clarity, depth and wonder to the AotF (take that, LotR!). Entrancing!

2) Frederic Chiu's two "Classical Smackdown" performances (Debussy vs Prokofiev and Bach vs. Philip Glass). Chiu is one of my new favourite pianists! He's smart, charming and an amazing musician. The first smackdown was on our side of border (Canada), so we took one of Mike's 12-year-old piano students to it...he loved it! His mom said he didn't stop talking about it once he got home. The second one was performed in a stone chapel by candlelight as a monster storm had blown out the electricity. Serendipity, that - one of the most atmospheric concerts I've ever been to. The Glass was especially ethereal in that setting.

3) The Bach Chaconne from the partita No.2 in D minor. Originally for solo violin, this was an arrangement by Mendelssohn for violin and piano, a great performance by Tai Murray and Frederic Chiu. [As an aside, it was Mendelssohn who, in part, helped resurrect Bach's music from possible oblivion.]

4) The "prelude" to a concert at Temple Beth-El introduced me to my first classical saxophone quartet and I was completely blown away. The Donald Sinta Quartet are amazing (I'm running out of superlatives, LOL!). We would see programs by these guys twice more, both as good as the first.

5) Bach's Fantasy and Fugue in G minor (arr. Liszt), originally set to be performed by James Tocco (festival director and great pianist - he's also a very approachable guy!), performed by Woori Kim, a really strong, memorable performance. A PhD in music in her own right, she was also one of the two hard-working page turners for the whole festival, and a very nice person!

6) Poulenc's "The Story of Babar the Little Elephant", performed by James Tocco on piano and read by Rhoya Tocco Didden. This quite bizarre story (for those of you who have never read it, it really is quite avant-garde, funny, tragic and touching) was complemented beautifully by Poulenc's music.

7) THEN there was the incredibly fun, moving, jaw-dropping evening of music with Peter Schickele. This was one of the musical highlights of all time, I think. Many people are familiar with his alter-ego creation, PDQ Bach, but Schickele is also a composer of modern "serious" music of very great merit. Beautiful stuff. And, after this concert, not only am I convinced that the blues should only ever be played on bassoons, I have been singing "Howdy There" from Oedipus Tex.....quite the ear-worm.

8) The Telegraph Quartet!!!! They played the Britten String Quartet No. 1 in D (Op. 25) as the prelude in an UNBEARABLY hot church. It completely entranced me.

9) At the same UNBEARABLY hot church, 23-year-old Ivan Moschuk gave one of the best piano recitals I have ever heard. Bravo!

10) The world premiere of Sahba Aminkia's "Night and Fog"; so incredibly raw and moving at the same time.....

 The final concert held several treats: 

11) A really interesting piece by Joel Hoffman, "Self-Portrait with JS", in which he takes Bach's Sonata for Viola da Gamba and Harpsichord in G major and by either subtracting notes, freezing certain unusual chords in time or "spinning the wheels" in repeating sequences gives a brilliant whole new look at Bach.

12) The Eisenhower Dance company interpreting the third Brandenburg Concerto. This was one of those times when you're watching with mouth hanging open and bated breath! The troupe of six dancers did nothing less than make counterpoint visible in three dimensions. Absolutely captivating.

13) James Tocco, David Buck, Kimberly Kaloyanides Kennedy and the Detroit Chamber Winds and Strings presenting the fifth Brandenburg, performed on piano rather than harpsichord (upon which the other two Brandenburgs were performed). This was basically what could be called the very first piano concerto because, although written for a state-of-the-art harpsichord that Bach had acquired it really is best heard on piano (sacrilege? But no, my friend! The writing actually seems like Bach knew where the technology would or should go!).

At the end of the concert, there was a very moving tribute to James Tocco who would be stepping down as Artistic Director after 21 years! He will return as a performer, though. We said goodbye to our two page-turner friends whom we had come to know over the course of the two weeks and trundled on home.

This whole festival was every superlative I can think of.......

....I guess there's not much more to say!!!!!

[Check in tomorrow for my own little tribute to Bach....]

Saturday, 28 June 2014


We had another cutting class today at Sensei's house - it was beautiful but quite warm. We could only stay for the cutting and not the socializing afterwards as we have our last concert in the Great Lakes Chamber Music Festival today (look for a longish overview post on the festival tomorrow).

I was able to cut double thin mats (limited cuts, but good ones), and got to re-connect with Stacia who will training at our dojo for the summer. Looking forward to that!

Here's the really cool thing - before the cutting began, just after a review of the rules for the cutting class, Sensei announced to the whole group that I had achieved my Shodan rank!!!!!! I can't tell you how happy this makes me!

Here are a couple of photos of the old lady cutting wara (bent back issues due to disability, but still clean cuts):

Wednesday, 11 June 2014

Iaido Shodan Test

I can't believe it actually finally happened! If you had told me a year ago that I would be achieving this, I would have told you that you were crazy. Almost exactly a year ago I was in the throes of the first monstrous flare of RA, almost immobilized and certainly downhearted. Last night I did my first degree black-belt test in Iaido, and I'm thrilled to tell you that I think I did fairly well (results will be available soon). Last year I had to stop going to Iaido class just as I was training for my black-belt, among many other things that I had to stop doing. I have been pushing my physical envelope a bit lately preparing for this test, but I think my new meds are beginning to help as I'm not completely bedridden after training so hard. My Sensei is a wonderful man, and has allowed me to do all of the kata standing as kneeling is out of the question. I also use a smaller wakizashi rather than a katana for training due to range-of-motion issues in both shoulders and wrists. I did use a full-size shinken (sharp blade) for the tameshigiri (cutting) part of the test, though. However, the number of cuts I could do were limited to what my joints could tolerate. All of my cuts were clean, though.
The test has a lot of components: a written essay on one of the philosophical adages, a written test on the parts of the Japanese sword and gear, proficiency in thirty solo forms (with an unsharpened sword or iaito), 3 knife forms and 2 paired kumi-iai forms (two people with wooden swords, no contact; my husband Mike was my partner; he's a black-belt) and actual cutting with a sharp sword (rolled up straw mats or wara soaked for a few hours are the target). Of the thirty forms there are 12 basic seitei kata used at every testing level, two long ones specific to this test and then Sensei picks five from the rest so you have to know your stuff. 
I felt good, in the moment, in the zone. Everything seemed focused. Results will be forthcoming, so keep checking back. Regardless whether I passed or not, I feel like I've graduated to near-normalcy. That's a huge accomplishment!!!!!

Sunday, 8 June 2014

The Walk to Fight Arthritis 2014

I've been looking forward to doing this national (Canadian) event for a few weeks now, since I'm in a somewhat better place health-wise than I was a year ago when first diagnosed, struggling through 1 km. It takes place in many communities across the country on the same day.
When we awoke this morning, it was raining....this was after days and days of perfect sunny, cool weather. Off we went, nevertheless. Mike had registered as well so he could walk with me as my support personnel, so to speak. I had a lot of donations again this year, and ended up 5th on the individual fundraising roster for the local walk! That was pretty cool, and many thanks to my thoughtful contributors! The funds are put to very good use and I have personally benefited from some of the funded programmes.

The organizers did a great job and everything ran smoothly. Here's the really incredible thing - the rain stopped literally 3 minutes before the walk began and started up again directly after the walk was done, so it was coolish and cloudy for the walk, which was actually quite pleasant. I managed 3 km before my joints could take no more pavement walking, but I'm pretty proud of that after the year I've had and the damage that RA has inflicted on my body.
In addition to the shirt design which I shared in a previous post, I also made a hat with the "alien invader" theme:

Believe me, it took some work and fancy methods to get those eyes to stand up comfortably on that hat!
Here's the back of the shirt in action:

You can also just see the Martian wristbands I had made.

Afterwards, lots of good food and friendly people:

I'm already looking forward to next year when my goal will be the full 5 km, providing the meds continue to work and no nasty side-effects sidetrack me. Y'all will have to cross your fingers for me 'cause mine no longer work that way, LOL!

Wednesday, 21 May 2014

It's been a long time.....

I know - this is the first post since December! I'm a baaaad blogger....

It has now been almost exactly a year since RA reared its ugly head, and a rocky road it has been. I was doing very well on methotrexate, and was able to go hiking in Tucson last November. Then the methotrexate had to be discontinued as my liver enzymes became very elevated. My rheumatologist (who I really like) decided it was time to try a biologic. The one I would be taking is a TNF (tumour necrosis factor) inhibitor. Basically, in as simple terms as I can put it, the drug blocks the line of communication between the front line and the "troops" of the immune system; the message to attack never makes it to the big guns. Of course, this means that attacks against real, honest-to-goodness baddies such as infections also don't happen. I have to be very careful. The drug will be administered by IV drip at an infusion clinic, with the first two doses a month apart and then every two months thereafter. These drugs are incredibly expensive (I couldn't believe it when they told me how much) and we would have been unable to afford them as our insurance limit would only have covered one dose if they covered it (which they don't). The drug company itself stepped in and offered the drug free under a "compassionate" outreach; quite amazing, no? I am also in the process of applying for a provincial drug plan which calculates your deductible based on household income; it's a long process with lots of paperwork, needless to say. Anyway, I've had the first infusion and am up for the second in about two weeks. The nurses were great and it was smooth and painless for this hopeless needlephobe. I'm hoping it works as things have been really going downhill in terms of stiffness, pain and inability to do certain actions again.

All that being said, though, I'm a stubborn old bird, and have been making every attempt to stay active and moving. I walk or use the stationary bike daily and go to Iaido three times a week. Get this - I'm going to attempt my black belt test on June 10th! It's very strange - I can do repeated actions on the mats yet limp along outside the dojo. I mentioned this to my Sensei and he told me the story of an 80-year-old Aikido Sensei who had to be virtually lifted from his chair and helped to the mats, but once on the mats he was able to do incredible things. He told me I was in good company, LOL! Personally, I think the dojo is magic.

In April we took a long Amtrak trip from Detroit to Albuquerque where we hiked (short distances) for three days then returned. I LOVE LOVE LOVE the train! Zero stress, our own little roomette with complete privacy, meals (vegan) included, incredible scenery and the rocking motion of the train lulling you to sleep. I could get up and walk around as much as I wanted (mind you, with my balance issues I was a bit like a pinball and actually ended up in a stranger's room when the train shifted!). I never want to travel by plane again. We loved it so much that we booked a trip for September from Detroit to LA, where we will drive up the coast to Monterey before returning.

 Back where I belong:

Coming up on June 8th is the Arthritis Society walk. Remember I did it last year and was just barely able to shuffle 1 km? Well, I'm hoping to do at least 3 km this year. If you know me at all, you know I love to dress up for these things. Last year was my "Slow Moving Vehicle" shirt. Here's this year's T shirt design which I had printed at Vistaprint:
This is the front:

And this is the back:

I had a really cool Martian hat that I made for the Martian Marathon which I was unable to attend, so I ran shuffled along with that theme. Now I get to wear my hat!!!!  If anyone wants to donate to the walk, you can do so here:
Deb's Arthritis Walk Page and my sincere thanks. I had occasion to use their programs over the past year and they also allocate huge amounts to research and incentives for specialties in Rheumatology (we are woefully under-serviced in Canada).

Lots of news; hopefully I'll update a little more often from here on in......