Sunday, 1 December 2013

At long last - an Update!

Yes, it's been quite a while since I last posted here, so I figured it's time to at least write an update on things in general....
...which are pretty good. The medication (Methotrexate) was doing it's job and my pain levels where down (always in discomfort; frequent pain upon extending an affected joint; no constant pain) while mobility was up (been doing a daily series of head-to-toe exercises from my PT). Then I got a phone call from my Rheumatologist's office this past week. The results from my most recent monthly bloodwork showed that my liver enzymes were elevated; I would have to cut back on the dosage and see how it affected the blood results. I'm hoping everything will balance out okay.

We recently took a week-long trip to Tucson and had an amazing time. I was able to hike (fairly slowly, on level and rolling trails) for distances between 2.5 and 4 miles! Trail surface helps a lot; nice packed sand/fine gravel softness. One day, however, we took a drive into NM and did a cross-country hike of 4 miles. Beautiful desert hard-packed sand, but with lots of up-and-down through arroyos. I did well (but was pretty much done-in by the end; not like the "good ol' days" of 7-9 mile hikes with rigourous climbing). The warm dryness wasn't bad either, LOL. Mike and I often did different hikes in the same park so he could go off and do more strenuous stuff; I absolutely hate to think that I'm holding him back. My early morning desert hikes had me thinking a lot, about all sorts of stuff. Stuff like it's damn good to be alive, and be invigorated by nature. I would just stop and gaze up at the mountains around me, absorb the early-morning quiet of the Saguaro stands punctuated by birdsong, marvel at the jackrabbits the size of small antelope (well, almost). I would also think about stuff like knowing that I will never race again. The destruction to my knee cartilage and the bursa in my hips preclude that kind of stress. I'm okay with that, and I won't enter a race to just walk in a leisurely fashion. Kind of negates the whole concept of a race, you know? But hiking will still figure large in my future, I hope (mentally knocking on wood, here). A few bits of gear from my racing days helped a lot on my hikes. I had a very small Camelbak for marathons which was perfect for these short hikes; it held enough water but didn't put unnecessary strain on my immobile shoulders. Add to that a largish waist pack, worn in front, for everything from snacks to a small camera, and I was outfitted perfectly. My Road ID wristband I wore for races now has one of their new "Medic Alert" badges on it and the profile has my complete medical history. And finally, Altra's Lone Peak trail shoes were like walking on clouds.


Sunrise at Picacho Peak from the Calloway trail
 
Heading out on a solo at Brown Mountain
 

Petroglyph at Signal Hill

 

The Intrepid Smurf (with blue tuque) on a cross-country endeavour (it was cold that day!)


I've been back to Iaido!!! The support of everyone at the dojo has been quite touching. My sensei is a truly wonderful teacher and has adapted everything for me! I now have to use a small aluminum-alloy bladed wakizashi instead of a katana (both for the weight and the length of the sword). I am not supposed to kneel again, ever, so that has to be taken into consideration, too. I can't bend certain ways nor lift the sword well over my head. However, he still insists that I should try my Shodan test in the next 6 months or a year (adapted, of course). We'll see. Right now, I'm so happy to be back on the mats that testing is quite far from my mind. And this brings me to a wonderful realization. The disease has given me a gift - I take things slowly and am incredibly aware of everything around me, and of my body in space (by necessity). There is a concept in Iaido - Shinken Shobu, which literally means a "duel with live swords", and figuratively means treating your practice sessions as though they were duels with sharp swords in which every move and every decision is vital. It's a bit like that, and is a feeling I had on my hikes, too. It's a very new awareness for me...makes you feel very alive.

Astronomy marches on, but there have been few clear nights in November. Last night we did go out. It was cold and I had so many layers on that I felt like the Michelin Man. However, I didn't get cold except for my fingertips, so it was worth all of the clothing (I feel like I'm a walking advertisement for Marks Work Wearhouse's T-Max line!).

So, things are in a good place. Hopefully they'll stay there for a while.

Sunday, 15 September 2013

Reinventing myself - Astromony Pt. 2

Yesterday's entry dealt with ordering a new telescope and preparing a stand for it. This entry will be a review of the 'scope itself, the Orion Starblast 6i. We have a fair amount of past experience with Orion telescopes and have always found them to have great products that are also affordable; I highly recommend the company. The Starblast 6i is a 6" f/5 reflector on a Dobsonian base, with the added benefit of push-to technology. The Starblast 6 (minus the push-to computer) is usable pretty much out of the box, but the Intelliscope option requires quite a bit of prep work on the base and installation of the various components that go into making the technology usable. There are quite detailed instructions, but if we hadn't already assembled Mike's SkyQuest 12" Intelliscope a year ago we would have had a much more frustrating go of it working through the sometimes tangled web of procedure. This time it was a lot easier due to experience. Orion's tech support is always helpful, though, and I do suggest contacting them if necessary throughout this procedure. I had bought a "2nd" as I saved a lot of cash this way, and I must say that the scope looked brand new. We did run into a problem in that the two bolt assemblies that attach the tube cradle to the stand were missing. A call to Tech Support to get the exact dimensions and configuration and a quick trip to the hardware store solved that problem.

In the field, this is an amazing 'scope. I did have to figure out some kind of portable stand (see Astronomy Pt. 1 for how I solved this).

The 'scope on its new stand.

Detail of stand.
 

I spent the first two observing sessions just playing around with the computer to learn its ways for myself (I knew a bit from helping Mike with his) and checking out the optics on various objects, mostly Messier objects (clusters, globulars and galaxies) and double stars and was really pleased with the results. The 'scope comes with two eyepieces (25mm and 10mm), but I already had other eyepieces to round out what I would need for all-round observing. I presently use an Edmund Scientific 28mm, Orion Epic II 18mm, the 10mm one that came with the scope and a huge Orion Long Eye-relief 6mm. These effectively give me 27x, 42x, 75x and 125x with this scope. These can all be doubled with my Barlow. Right now I seldom use the 25mm that came with the scope as it isn't much more powerful than the Edmund, but I might start using it more.
My first real observing session with the 'scope took me to Aquila and Lacerta. It is a beauty on double stars and open clusters. Even faint planetary nebulae were viewed well. Galaxies are amazing in this 'scope, the views giving long arm extensions (I poked south of Lacerta to take a peek at NGC7331, which is actually in Pegasus). For my aging eyes and the skies I normally view in, the limiting magnitude for this scope is effectively 14. I did make a dew cap to fit the Starblast, as I do with all my 'scopes, this being a fairly humid climate.

The Intelliscope interface is great. Although I do tend to "starhop" a lot, it has saved me many times when in a sparsely-populated part of the sky. Also, for fairly faint objects (planetary nebulae, particularly) it gets me to the spot so I can confidently boost power in an attempt to view the object.

This is an extremely portable instrument, sitting in the back seat with the belt around it. We have a VW Tiguan (small SUV), and we can, in fact, pack Mike's complete 12" components, my 6" 'scope, the stand, a folding table, our two accessory cases (essentially foam-lined hard-sided suitcases that hold all of our eyepieces), several books and star atlases, clipboards, a briefcase, a folding chair, two large dew caps, cold-weather clothing, a food bag and both of us and still have some space left in the back seat!

In conclusion, the Starblast 6i is a small 'scope with big muscle and I look forward to many, many satisfying hours of observing with it. A great 'scope for novices (without the Intelliscope) it would also be an excellent second 'scope for an experienced observer who would like an easily portable instrument to throw in the car for travelling or star parties. I am a very, very satisfied customer and highly recommend this 'scope!



Saturday, 14 September 2013

Reinventing myself - Astronomy Pt. 1

I had posted a while back that I was at a place in my life where I needed to establish new defining activities ("hobbies") due to severe illness. Microscopy was one thing that has come back into my life. Now I'm re-establishing "macroscopy" with my interest in astronomy. For years and years I had helped Mike with his interest in the science by doing sketches (I'm the artist of the family) and basically hanging around to see what he was viewing at the time. He has been an amateur astronomer since his early 'teens and is now a real force to be reckoned with in this field (his Astronomy blog is here: Deep Sky NGC). Then we recently had the mirror of our old 4.25" reflector Astroscan resurfaced and I had been having a lot of fun poking around the universe with my own little 'scope. It was giving pretty impressive views and I logged a lot of Messier objects as well as some studies of Leo, Lyra and Aquila.
Mike then thought it was time for me to upgrade. Our "go-to" telescope company these days is Orion. Excellent, affordable, portable instruments and accessories. Mike has had their 12" Skyquest XX12i for about a year and has been extremely happy with it. It sets up and breaks down easily, is a breeze to transport and gives amazing views. It has push-to capabilities (computerized directions to which you manually guide the telescope). We checked what they had and liked the Starblast 6i, a 6" reflector along the lines of the 12". Better still, we saw one on their website listed as a second which would save us about $120. Done deal!

 



This is a tabletop Dobsonian stand, modelled on the same stand as the 12". While the stand would be great on a picnic table or other semi-permanent table, I needed portability, so while anxiously awaiting the delivery of my new baby I poked around the dusty corners of the web to see what other people were doing. There wasn't much to find. One person mentioned a storage tub, but this seemed unwieldly to me. Then I read a person's review where they mentioned a small portable workbench....hmmm. This sounded more like what I wanted. We found one at Canadian Tire (for my US friends, this is a huge CDN chain which is really hardware, sporting goods, outdoors stuff, you mention it...not just tires, LOL) for $17.99 CDN!!! Couldn't go wrong even if it didn't work. It was a bit of a PITA to assemble, but seemed lightweight enough to do the trick.


The Jobmate Portable Workbench
By cranking the two tabletop pieces out to their max, I would be able to set the Dob stand with two of the three feet over the edges, the other in the space in the middle and the central bolt assembly (essential to the push-to technology) would also sit in that central space allowing it to move properly.  It was a bit slippery on there, though (coated board), so it was time to tweak! I took some leftover laminate flooring and cut two pieces to fit around the 'scope base, then  glued and nailed these to the Jobmate:
 


 
 
These would effectively brace the stand without interfering with the movement of the base of the 'scope. I also added some of those self-adhesive felt protectors for the bottom of furniture legs (Dollar Store stuff) on either side to buffer where the two outer legs would come into contact with the stand and increase stability:
 

 
Add some nice black lacquer (including on those bright red crank handles which I will try to remove some day):
 
 
 
...and you have a folding, lightweight, very sturdy portable stand for the Starblast that doesn't vibrate or wobble. Pretty sweet for less than twenty bucks.
Here it is in the field before I did all the tweaks:
 
 
 
 
This stand puts the 'scope at exactly the right height for viewing (I'm about 5'6" and Mike's 5'9" and we were both fine - you could rotate the tube within it's cradle to adjust viewing height as well) and you don't have to reposition it around a large table for viewing ease, just walk around the stand. This stand solution works incredibly well; I'm really happy with the results.
 

 
Now, what about the 'scope? I'll review that in my next blog entry, but I'll let you in on a secret: it's all good!




Friday, 30 August 2013

Microscope Video #3

Here's the newest video from the wonderful world of microscopy. WARNING: There be monsters here!!!! Magnified mosquito larvae can out-gross, out-scare and out-the-stuff-that-nightmares-are-made-of any monster from the movies or literature, and here is one in all its heart-beating wriggling glory. There are also some other nice, cool things in the video, too. Enjoy!

video


Sunday, 25 August 2013

Microscopy Movie #2

I got some really good footage from my microscope yesterday and today, all from some water stagnating in an old tire. There will be two small movies based on this. Here's the first one, with some really beautiful shots of some Stentor. They're quite fascinating!

 
video


Friday, 23 August 2013

Playing with my New Microscope

 
My new Celestron 44340 microscope is so much fun to play with! I got some stagnant water from outside and used a well slide to see what critters dwelled there (the video is less than 2 min. long):
 
video
 
This video highlights both the still photograph and video capabilities of the instrument. This was set on the lowest resolution, so not terribly great images, but still pretty cool IMHO. More fun to come!

Thursday, 22 August 2013

The Post I've Been Hoping to Write!

Ten weeks of meds and I don't think we can jinx it now - it's WORKING!!!!! Pain levels down, flexibility and range of motion up. I would estimate that I'm at about 50% of what my "normal" was before all this started. While this might not seem like a lot to you, it really is quite exciting to me. If this is as far as I go, I could be quite happy with this. I can function. Some of my recent achievements:

I drove on Tuesday for the first time in five months. Independence!
I put on my own socks.
I got a bowl out of the mid-upper cupboard.
I am walking a mile daily.
My weight is slowly coming back up from a low of 98 lbs.
Energy levels are better (still plagued by fatigue, though). [I saw a T-shirt design I like - "iTired: there's a nap for that"]
I can go up and down stairs, slowly.
I can usually pick things up off the floor (again, slowly and painstakingly).

If I could do a somersault, I would, I'm that excited! Okay, I know that these meds can just stop working for no apparent reason, and I know there are a lot of things I can't do yet, but I'm going to enjoy this right now regardless of what the future might bring. YEAH!!!!!!


Monday, 12 August 2013

SHHHH! Don't jinx it!

I've been a bit reluctant to write this post until I'm really sure that what I perceive happening is really happening. Two days ago I used a word I haven't used in what seems like a long, long time: "normal". I said, "The way I feel today I almost remember what it was like to be normal." I have waited a long time to say this, but I think the medication is working! It has been a long, slow gradual improvement, and then, two days ago, on Saturday, I realized I was slowly and methodically walking up and down the stairs in the "normal" fashion! I still have some very painful spots, particularly the right shoulder/neck/arm, left hand and right foot, all having swelling, acute joint pain and very limited range of motion. My knees and hips are still not normal, but the acute pain there has diminished so much that I am "walking" a km a day now. (I'm having to teach my body how to walk normally again). I've been able to cut back a bit more on pain meds, a good thing. I really only take them in the morning now, to kick back the dreaded morning stiffness (lasts a couple of hours for RA patients). My level of fatigue is still quite high; napping is de rigueur. I go for my monthly bloodwork tomorrow, and sincerely hope my liver and pancreas are able to tolerate the meds. If I had to stop them now......don't even go there...

Now I have to remember that true remission (as can be seen in cancer) is not attainable in RA, but clinical remission is, which means symptoms are diminished so much as to allow relatively normal function. Inflammation can still occur systemically. One never really weans off the meds, needing that support forever. Still, functioning relatively normally? That is like a dream come true!

So...keep this hush-hush. Don't jinx it! Fingers crossed! And hopefully I'll be telling you after my bloodwork is back that what I'm hoping is happening really is!

Friday, 9 August 2013

Biding my time....

This a pretty boring post, but I felt the need to write something about what's going on.
Being in limbo gives you time to think about what to do with your days while you're waiting (in this case, for meds to work). So many of the things I used to do and that, in fact, defined me, are now quite impossible. As the pain and inflammation does a tour around my body, the situation seems to change from day to day. In my original flare I was doing cartoons (and have ideas for a few more) when my left hand (I'm a leftie) decided to go on strike. Sausage fingers and very painful joints meant no more drawing. Okay....what about knitting? Wouldn't that hurt the hands more? Surprise! Surprise! It actually is helping keep them flexible, at least the way I'm knitting. I used to knit a lot; doggie coats and a knitted Tardis (yep, you read that right), but now the game has changed.  Here are my secrets:


1. Very short, thick needles of bamboo.
2. Lovely thick washable boucle yarn: very easy to knit with and very nice feel to the hands.
3. I start with 22 cast-on stitches and knit away in stockinette stitch (knit one row, purl one row) so that my hand position changes every-other row (avoiding repetitive strain).
4. VERY loose tension (I would get  a "D" even in beginner's knitting 101).
5. Just knit until I get a square (no pattern, no stress; mindlessness).
6. I hold the needles very loosely, not like you're holding a pen, and the yarn hangs loose rather than around my right hand. I've always knitted this way and have found that there are no pressure points or repetitive strain problems.

I've decided when I get enough squares, I'll stitch 'em together into a wee bankie to cover me when on the recliner. How Granny can you get? I just started with whatever I had on hand, then added other colours. Here's what I ended up with, colour wise:
 
 
I'm going to put them together in a Southwest-ish pattern like this:
 
...but with the terracotta around the outside border. It's my bankie and I like it.
 


Other activities:

 I am preparing work for my little telescope if my fatigue level will cooperate for night-time viewing (severe fatigue is also a symptom of this lovely disease). I started thinking about things I really enjoy doing. Back in my long-ago youth, I was fascinated with microscopy and you could find me glued to my Tasco deluxe microscope most weekends (yes I was, and am, a nerd). I bet a lot of you had that very same Tasco instrument in your childhood. When we were travelling a while ago, we saw a really cool microscope by Celestron that has a digital screen and built-in camera:

LCD Digital Microscope
 
It had a pretty high price tag that particular camera shop, so I just filed it away in my memory for future perusal. Well, I found a "like new" one on Amazon for about 1/4 of the original price, so...I ordered it! Can't wait until it gets here! Fun, fun, fun!
 
All this and reading, watching old movies, gaming....biding my time. Hopefully some good news soon????


Wednesday, 10 July 2013

Pharmacophobia and RA

 

As my wrists just aren't up to a cartoon today, I'm going to post about something I've been thinking about lately: pharmacophobia, the fear of medication. Read any forum, list or blog on RA and a recurring theme is the tough decision of whether or not to take the nasty drugs needed to slow down or stop the body's attack upon itself. It all boils down to fear, and for good reason. Some of the listed side-effects of these drugs read like a horror story. However, the fear is also fed (rather ironically) by the drug companies themselves and their advertising, or at least the part of their advertising wherein they are required to list every single thing that could go wrong when taking the drug, and these ads are prevalent on TV and in magazines. Now, to illustrate my point, I went through a recent issue of a national arthritis magazine, which logically is going to have  a lot of such ads; I just wasn't expecting as many as I found.  Here are the findings:
 
In a magazine of 72 pages, a full 35% was taken up by drug ads and their pages of side effects and warnings. I didn't count any ads for braces, mobility aids, adaptive equipment, eating programs or supplements. Inevitably, these drug ads follow a pattern: a full page showing smiling people doing activities (I counted 14 wildly grinning folk and a whole crowd of smiling onlookers). Message: happiness will ensue when taking this drug. But then come the pages of extremely small print, and this is where fear can set in: everything from a risk of serious infections like TB to a higher risk of cancer depending on the drug...seriously; everything except spontaneous combustion, but that might have been in there, too. Hmmm...an RA sufferer must really do their research and find out just what the side-effect probability is, then compare this to the inevitable if one doesn't take the drug, which is further joint damage, complete impairment and the probable involvement of inner organs including the heart.
 
For me, it has become a matter of quality over quantity. I want to live my life with a reasonable degree of mobility and painlessness. I say reasonable because I know I will never be my old "normal" again, but my new "normal" wants to be able to walk, to drive, to be able to write and draw and to be able to perform everyday tasks like chopping veggies, getting things out of the fridge, putting on my socks or a sweater or putting my hair in a ponytail without assistance and without a lot of pain. Maybe it's too much to ask, but that's my goal. For this to be a reality I know I'm going to have to go down that road where the quantity of time I have left might be shortened a bit by improving the quality. It boils down to living a fulfilling life or just taking up space.
Right now I'm completely in limbo. I literally take each day as it comes. I seldom know what day of the week it is, just that it's another day, trying to be patient as I wait to see if this first-line drug is going to help me, trying to deal with pain and lethargy, taking up space....


Sunday, 7 July 2013

Comix #13: "Magazine Display"

 
 
 
 
 
Sorry about the "wobbly" nature of today's comic - my wrists weren't very cooperative. 
 
Be sure to click on the cartoon for a larger, more readable version!


Wednesday, 3 July 2013

The ill-fated "Duellists" Comic

Remember I posted on the new #10 comic ("To-Do List") that I had done a comic about duellists that seemed funny at the time? I mean, come on: duellists? Who do I think I am, Kate Beaton? Lying back in a recliner at 5 am with painkillers washing through your veins can give you ideas that you think are hilarious but apparently aren't so much.
Anyway, for the sake of posterity (and because I don't have another comic for today), here is the original unfinished #10, "When Duellists Have RA".


Wednesday, 26 June 2013

Patience is a Virtue

Okay - I'm going to get all grumpy on you, so bear with me. Patience is indeed a virtue, and an absolute necessity when dealing with this disease, but there are times I feel far from patient. There are times I want to rail against the fates, tear my hair and rend my garments, to get classical. It's impatience with a dash of "why me" thrown in, which could easily escalate into a pity party. I get this way when my major daily triumphs are getting dressed mostly on my own and being able to open a freaking applesauce cup. How did I get to this place? Then I think back three months, to when this all started. Three months. That's it, and I'm already undergoing treatment. People go through years and years of this before getting help and being diagnosed and finding the right combo of meds for relief. How do they do it without going mad? I stop and do a quick assessment of how I feel right at this moment and compare it to May 12th, my lowest point thus far, and realize there is no comparison. I really have come a long way, in this short time.
So suck it up, Chiquita; time to get virtuous again.

Friday, 21 June 2013

RA Comix - a message

For those of you who follow RA Comix, there has been a short hiatus from production as I'm sure you've noticed. My wrists have been very uncooperative for about the last week, especially my drawing hand (in fact, I've been typing with one finger of the other hand up until today; the new skills you learn as an RA patient!). Comix will resume ASAP, hopefully within the next day or so, as my wrist seems less swollen and broken-feeling today. Can't wait to get drawing again!
Thanks for your patience!

Tuesday, 18 June 2013

Update time


I believe it's time to give a bit of an update of what is going on in my life at this point. As the Depo-medrol shot continued to slowly wear off, I started treatment with Methotrexate last week. It's kind of strange, but I'm almost in a balancing act at the moment between the slowly declining and the (hopefully) slowly improving. I know it will take a long time for the MTX to work (if it IS going to work) and that I likely will get far worse before I get better, but I can deal with that, I think. At the moment I have maybe 6 "useful" hours in a day, the rest having to nap or just rest. I can read during some of the "non-useful" hours (so they're actually useful after all), but nothing very deep. I can also watch old movies on TCM during those down times; I do feel like something of a slug, though. Mornings are....well, they just are. It takes a long time and some Tylenol 3 to get me going and I have a lovely relationship with my new recliner. I'm trying to journal things carefully so we track any changes. I can't drive, but I can sit in the car for longer periods of time, I'm still able to get out of bed and the recliner on my own and can dress myself (except for socks). I am walking (albeit very slowly and carefully) without a cane. I can shower, but it takes a looong time, LOL, so still definitely much better than before that shot.

The prevailing "wisdom" about exercise and RA is "do it if you can; don't if you can't", referring to the fact that one shouldn't exercise during flares or through pain as it can exacerbate the joint damage. There has also been some research done about muscle mass in RA patients, even those who exercise a lot, and it has been shown that the disease prevents some of the building of muscle mass. Sigh. Since this disease began its attack in late March, I have lost about a sixth of my weight through lack of appetite and inability to exercise. Please don't say, "Oh, you're lucky - I wish I could lose weight like that". It is NOT a good thing and quite distressing. I have watched my very fit body literally waste away before my eyes, hard-earned muscle mass melting off, leaving wasted limbs. My BMI is presently "very underweight". It's hard to pack in enough calories when you just don't want to eat, but we're working on it. I believe this might be improving as I make an effort to eat at certain times of day whether I'm hungry or not.

One thing I have been doing when my wrists cooperate is that I've been drawing cartoons from an RA perspective. I'm sure people without RA will find them kind of strange but it is cathartic to draw them and the feedback from the RA community has been good.

I guess that's about it right now. Kind of feeling like I'm in limbo.....

Sunday, 16 June 2013

Comix #5 - Red Letter Day

 
We know what day is really important!
 
 
 
Be sure to click on the comic for a larger, readable version!


There is now a page dedicated to the compilation of all of the comix, which will be added to as they are posted to this blog. The link is under the title picture at the top of the blog.

Thursday, 13 June 2013

RA COMIX #3

 
 
 
 *****There won't be a comic tomorrow.
 
 
Tune in on Saturday for Comix #4: "A Strange Fever that Strikes on a Saturday Night"


Wednesday, 12 June 2013

Tuesday, 11 June 2013

RA Comix

I keep this monster disease at bay using humour, so I decided to draw some comics based on RA as therapy. Obviously, I know firsthand that there isn't really anything funny about the disease, but those who have it and have experienced the situations in these comics will "get" it.
I truly hope no one is offended by them, but this is one of the ways I deal with the beast.

So, without further ado, here is installment #1 of RA COMIX:




Episode #2: "Dining Out" (Coming Soon)

Sunday, 9 June 2013

A Different Kind of "Race" Report

This will not be a race report per se, but a report on a small victory that perhaps was not so small.

On my first visit to the Rheumatologist in May, we found some pamphlets from the Canadian Arthritis Society, including one for a fundraising walk on June 9th at a local park (there were venues all across Canada for the same day). That seemed impossibly distant and also physically impossible for me to do at the time. After getting a steroid shot to alleviate symptoms, it seemed more likely that I could do the walk, so I started fundraising, eventually raising $465 (thank you so much, everybody!!!). Symptoms started creeping back in two weeks later, but I was still good enough to get there and do the 1 km option today.

The weather was lovely, some friends had come out and there was lots of great food, music and cool incentives, as well as info tables from some PT places and the Society itself, where I picked up some great lit.

It turned out that I was the only person doing the 1km, so although I started with everyone, the finish line was a lonely place, LOL! At least I didn't get lapped my the 5Kers. I hobbled slowly along (see my warning sign on my T-shirt below). Mike shadowed me every step of the way in case I couldn't make it and it was wonderful having his moral support. In all honesty, I would say this took me as much effort as a 10K at race pace. I went home and had a 2.5 hour nap after lunch.

So, long story short, it was a big victory for me, especially because yesterday was a bad day and I didn't think I'd be able to do this.

Here are some pics from the Big Day.

 

 

I should have had a flashing light on my head, too!


 
Toddling along.

Monday, 3 June 2013

NOW PLAYING.....

 
 
 
Yes, I'm afraid the party's over. The Depo-medrol shot is showing signs of wearing off. Not full-blown yet, of course, but the pain and swelling is definitely on the rise again. At least I got two weeks of feeling relatively normal. I see my Rheumatologist in nine days (yes, I'm counting) to start treatment. That can often take two months to begin working the way it should, if its going to work for me. In the meantime, I have my Arthritis Walk in less than a week, depending on how I can move. Mike has offered to walk with me or in place of me if need be. Many, many thanks to all of those who've donated so far. We've surpassed my goal by a long shot!
If you'd like more information on the walk, you can check it out here: Arthritis Walk Donation Page and search Deb Ethier.


Tuesday, 28 May 2013

Good Things I Have Learned from a Bad Disease

 
 
 
1. Nothing on the face of this planet can equal the care and support of a loving partner.
 
2. The kindness of friends, family and acquaintances is boundless.
 
 3. I am more adaptable than I thought I was.
 
4. Pain thresholds are mutable.
 
5. Taking things slowly and carefully is not a bad thing (coming from someone who used to do everything at Mach 4).
 
6. You CAN let go of some things that you previously thought were very important without regrets; regret can be a burden.
 
7. Hopefully I AM a bit tougher than I thought I was; keep this image in mind: 
 
 
 
8. Asking for help is not admitting defeat.
 
9. The fine art of napping is not a lost art.
 
10. Finding out what truly defines who we are is exciting, even at this late date.
 
11. Small victories are not necessarily small.
 
12. Never, ever lose your sense of humour. The monster shrinks in the face of laughter.
 


Monday, 27 May 2013

Three Good Things

Fanfare, please!


From my most recent medical appointments came three bits of good news:

1. The Orthopaedic Surgeon doesn't want to operate on my left knee at this time. He says the damage is conducive to the RA and has handed management of that part of it over to my Rheumatologist.

2. The Cardiologist doesn't think I need the catheter ablation redone at this time and cut back my meds a bit based on the loop I wore for two weeks and the tests done earlier in the week.

3. The Lyme Disease test came back negative.


Monday, 20 May 2013

Bottom of the Rabbit Hole

...and into a strange and scary world.

Ever feel like the deck is stacked against you?



Many things have happened since my last post. Again, I've been doing this in bits and then will upload the whole thing when done.

Remember at the end of my last post when I said,

"The near future: Barring any phone calls on the bloodwork, an MRI on May 14; app't with GP May 15; back to cardio clinic May 21. There may be more stuff in there. Nice, pleasant ordinary stuff I hope."

Hahahahahahaha!

1. May 9-11: Progressively worse. Mornings pure hell. No more sweet spots in the afternoon for me. Can do virtually nothing for myself. Mike learns many new skills, including putting my hair in a ponytail. He does really well, but I consider cutting all my hair off to make life easier. Mike stalls me on that decision. I have no appetite and am losing weight. Things I used to find delicious leave me cold.

2. May 12: Yes. it is Mother's Day. Early in the morning, I see a Momma duck and her ten sweet little fuzzy ducklings at the bird feeder. It's a true Mother's Day moment.
I am so bad by late afternoon that Mike insists we go to ER. He gives me a choice: ambulance or car. I choose to try the car first. We know it will be a long and gruelling wait at the hospital if we come in on our own, though. We have to stop several times because I can't tolerate sitting for very long. We arrive at 7:00 and go through triage. They apparently don't like what they see, particularly the hideously swollen ankle/foot. Unbelievably, I am in an ER bed in a warmed gown and under a warmed blanket, being tended to by a very attentive nurse by 7:25! They take a lot of blood, and keep a line open for any meds. [Aside: Our typical approach to everything has always been to find as much (black) humour in it as possible. We find what we can here tonight. It's a good approach if you dig deep enough.] The doctor comes and does a complete examination, ordering tests and blood. They give me a great, big, lovely syringe full of some blessed liquid that makes me comfortable for the first time in weeks. The pain is still there, but so far away that I'd need binoculars to see it. I feel myself relax. It's a novel feeling. The doctor returns after checking over bloodwork results. He sends me for in-house x-rays to check if there is any damage to the ankle tissues. The orderly who takes me there is a hoot. Back in ER, and the doctor doesn't want to start treatment until a firm diagnosis is made. The RA factor (rheumatoid arthritis factor) hasn't shown up in my blood, but the results do show a lot of inflammatory stuff going on. The best gift? He has put in a request for me to attend the hospital's Internal Medicine clinic, which will get things rolling. It might take a couple of weeks. At least things will happen. He also schedules me for Ultrasound the next day to make sure there are no blood clots in that swollen leg. We go home, feeling like some good came out of the bad tonight. All of the ER staff were wonderful.
Now will begin the week of hospital/doctor visits every day!

3. May 13: The hospital calls and I'm in the Clinic for Thursday! I think somebody pulled some strings somewhere! We go in for Ultrasound. No blood clots!!!!!

4. May 14: MRI today, back at the hospital. Don't know how I do it, but manage to hold still despite the pain.

5. May 15: Back to my GP for followup. Believe it or not, this was the first appointment I could get to see him since April 15th. That's not right. Anyway, filled him in on everything going on. The nurse (who really is a wonderful and sympathetic person) was a bit surprised at all of the new stuff to read. They give me a paper telling me when my appointment with the Rheumatologist will be. Hold on to your hats and your temper: November 18.
I stifle my howls of incredulous outrage and just tuck the paper away like so much recycling. The GP gives me some better pain meds. We get copies of the bone scan results and any other tests not done at the hospital to take to my appointment on Thursday.

6. May 16: Off to see Dr. Ahmed at the Internal Medicine Outpatient Clinic at the hospital. This is a man who takes charge and knows what he is doing. He goes over all of the results of everything thus far. He even has the MRI results from Tuesday, which show a lot of nasty stuff going on in my left knee, likes torn cartilages and a ruptured Baker's Cyst. There's that, then all of this systemic inflammation and joint pain going on. He sees these as two separate things going on (then there's my heart thingie, so make that three). He asks us to wait a moment while he pops across the hall to the Orthopaedic Clinic. I get in to see a surgeon right away! They extract a bunch of nasty-looking fluid from my knee. This was incredibly excruciating. (I'm a big baby, but this really was excruciating. Mike took a walk while this was going on. I'm glad he did - he would have been ashamed of me.). Before I leave, Dr. Ahmed has called a Rheumatologist to get an appointment, they've scheduled me back to see the surgeon next week and I'll make an app't with Dr. Ahmed himself once other tests are done for followup. More bloodwork on the way home.
 Dr. Ahmed is my new favourite doctor.
The Rheumatologist's office calls and says that they can squeeze me in the next day at 10:00. No, no; I'd rather wait until November....

7. May 17th: Perhaps my worst morning yet. Not only is it almost impossible to get out of bed, but I end up hunched over the sink (the only place I can reach as I can't bend), dry heaving from the pain meds (didn't take them with enough food or water, we discover later. Lesson learned.). I visit Dr. Abdelgader, the Rheumatologist, who is probably going to see me at my worst. He spends about 40 minutes with us and actually looks at me (my GP seldom does that, believe it or not; eyes on computer screen). He goes over every little bit of info he has. He says Dr. Ahmed has talked to him on the phone about me. He examines me and asks a lot of questions. He's kind of surprised at the state I'm in. He's working like a detective, and narrows it down further and further. His fairly firm diagnosis is Seronegative Rheumatoid Arthritis, which is the type in which no RA factor shows up in the blood; about 30% of people with RA have this type. Symptoms and treatment are the same as Seropositive RA; it's just a bit harder to diagnose. It's an autoimmune disease with no cure. However, there are some disease-modifying drugs that can slow or stop the body's attack on itself, thus preventing further joint and tissue damage. One of the most common drugs is a chemotherapy drug which is taken in lower doses for RA, but is still rife with side effects. There are some things we can do to lessen those, though. It doesn't work for everyone. I'll need to get liver toxicity blood tests about every 6 weeks to monitor liver function, and beforehand get some chest x-rays and other bloodwork to make sure everything's good. I'll be back to see the Rheumatologist in about 4 weeks to possibly start that treatment. After discussing the treatment, he then brings in his ultrasound machine and shows me the fluid in my knees, and the patches of inflammation. It's actually quite fascinating. Then he does the best thing of all - he gives me a systemic injection of methyl prednisolone to get me through the next couple of weeks. Yes, it's a form of corticosteroid and I know the immense problems with those, but a blessing on the head of whoever discovered this stuff. I ask him if it's okay to take my other meds after having this shot. He says that I won't need my pain meds. Of course, I'm pretty incredulous. Mike had gone out to the reception area at this time to take care of some details with the nurse. The doctor says to me, "You're very lucky to have such a supportive husband.". Believe me, sir, I know!
Off to the x-ray department (just downstairs), then Mike goes to get the car while I make my way to the door. I go to get in the car and can sort of bend my knees! We look at each other in amazement. Things improve pretty steadily. I can't believe it.

8. May 18th: I get out of bed on my own and walk around the house (still not walking normally, but I'm walking!).  I'm able to shower and dress with just a tiny bit of assistance. I am feeling like me again, not that ghost of a lady who sort of looked like me. I feel like I have a big grin on my face all the time. Still really tired most of the time, but I can do things again. I feel the need to get many things taken care of before this reprieve draws to a close, though, and have to be careful not to overdo it.

9. May 19th: Mike takes me to do something I've been pining to do: a walk in the woods. We go to a nearby Conservation Area with a nice, level crushed limestone path. The weather is gorgeous. I manage to "walk" (my gait is quite unique) a mile in about an hour...not quite the Racin' Rabbit, but I am ecstatic to be the Shufflin' Snail. It's a glorious feeling, Nice, pleasant ordinary stuff . Back home for lunch and a three-hour nap. Kind of wore myself out, I guess. I feel like I have my life back, if only on borrowed time.
Mike is able to get his piano practice sessions in again. It's lovely to hear Chopin and Debussy wafting through the house again.

The near future (still can't look much further beyond that):

May 21: Back to see Dr. Tarhuni, the cardiologist.
May 23: Back to see the orthopaedic surgeon. Nothing can be done to that knee, though, until the RA is stabilised.
June 12th: Back to see the Rheumatologist.
An appointment with Dr. Ahmed in there somewhere. I have a feeling he's the one who got everything moving.

June 9th: The Canadian Arthritis Society Walk to Fight Arthritis, all across the country, with one happening here. There's a 1K and a 5K walk. If things have not started going downhill by then, I'd love to do the 1K. It is recommended that I raise at least $100 to register. I'll raise the $ but promise I won't be disappointed if I can't do the walk. Something to look forward to, though! I can at least go and support others, hopefully.

 
Carpe Diem!

Friday, 10 May 2013

From Bad to Worse and Worser Still

Since I last posted things have gone according to the title of this post. Since I can't sit at the computer for more than about five minutes at a time, I'll do this in small stages and post the whole thing when it's done.

Ever feel like you're slowly falling down a rabbit hole, not knowing when (or if) you'll hit bottom? And then, if you do hit bottom, you'll have to find your way through an unfamiliar and scary land until you can find your way back home? Just call me Alice.

The last post ended on a fairly positive note, and believe me I've tried to remain positive, but I am just not made of the right stuff for this. Things started sliding again, with pain and swelling increasing. Early mornings are almost unbearable. Once I actually make it out of bed, I start shuffling around doing what I call my "laps", around and around the living room and kitchen. I stop for very gentle stretching to my limits. I don't sit down for a long while as I won't be able to get back up without incredible pain. My "sweet spots' in the afternoon aren't quite as sweet.

1. May 4: I can't get out of bed. I seem frozen in place by pain. We decide to set up a higher bed downstairs for me. Mornings get worse.

2. May 6: Went for my bone scan. The technician was a sweetheart and worked with me and my limitations. There was only one part of it I couldn't do because I just couldn't bend that way. She counted down the rest for me and approached it like a half marathon: even though I was reaching the end of my resources, I hung in there past mile 12.5.
The same day, we went "shopping" for things to make my life better, things from the "Home Health" store, things to modify my living space (including a raised toilet seat - sorry for being indelicate, but you don't know how low the regular ones are until you can't bend your knees!). We also bought a high twin bed frame and fairly thick mattress to be set up on the main floor for me. I can slide off of it a little easier in the mornings and don't have to negotiate the stairs.
Then things got really weird.

3. May 6, part 2: Before I relate the main event, I need to rewind to 2003. I had episodes of SVT (supra ventricular tachycardia) due to an extra electrical connection in my heart. An episode can easily raise your HR over 200 just sitting still. I had a catheter ablation to destroy the extra connection. I'm told at that time that it's possible that the connection will grow back. Guess what? It did. Fast forward to now. 10:00 pm: I'm sitting on the edge of the bed getting ready to retire when it starts. At least I know what it is and try to stay calm. I was shown physical methods to try to convert it back to normal. I try several times. No go. It's probably because I can't squat down low enough due to my knees. I wait twenty minutes (standard for this), then call the paramedics. One of them turns out to be a sweet girl I taught years ago! She's 38 now, but we recognised each other right away. The paramedics managed to eventually convert me to a slightly more reasonable HR with a different method, then loaded me in the meat wagon for a very painful ride (not their fault: my joints) and off we go.
The ER doctor and nurses are amazing. They keep me for a while, monitoring things. Jamie (the paramedic) uses clout to bring Mike to me from the waiting room. Told ya she was a sweet girl! Some meds to get my HR down. The ER doc tells me I'll likely have to repeat the catheter ablation. He apparently doesn't like what he sees on the monitors (something more than just the SVT) and gets me into a cardiologist for the very next day! I'm eventually released, and two tired cowpokes drive home in the wee hours. I babble something about voodoo dolls and that I wished they'd stop sticking pins in me.
During the night, my over-fertile brain starts doing some equations: severe bone/joint pain; irregular heartbeat; the tick that came in on Mike's shirt after cutting the lawn. I look into it early the next morning. Lyme disease raises its ugly head. We decide to go to a walk-in clinic after the cardio app't to get a requisition for the necessary bloodwork.

4. May 7: Today, we visited the very impressive Windsor Cardiac Centre and Dr. Tarhuni. This place is exactly what you would want a medical facility to be. I go through several tests, including a treadmill one which they obviously had to adapt for me. When I saw the "speed" I was going I almost wanted to laugh except the desire to cry was stronger; I did neither. There's a lovely full wall photo of a wooded hiking trail in front of me and the lights are a bit low, but I can see the monitor from the treadmill that there are some pretty irregular things going on. After this, they fitted me with a state-of-the-art monitor that I'll wear for two weeks. These are the folks who were written up in Runner's World for the cutting edge experiment they did with runners using these monitors at the Amherstburg Marathon. You can read about it here: http://m.runnersworld.com/health/real-time-cardiac-monitoring-makes-marathon-debut . I did the 10K at that event and was able to watch at the monitoring booth for a while when I was done. Never in a million years did I think I would be wearing one.
Then we went for a summative meeting with the main cardiologist. He had all of the printouts and info from the tests right there and also my history. He put me on some meds and asked about my difficulty walking. We asked if Lyme disease could cause this and heart problems. He turned to us and said, "Oh, yes!" He gives us the blood requisition. He's also going to book the London app't for surgery once all of the info is in finalized format AND will "talk to" my GP (now I didn't say anything except that he's been very difficult to get in to see, which is the exact truth), as well as take care of several other things.
I guess sometimes bad things happen for good reasons (ER trip to getting in here). I am totally impressed with this clinic.

5. May 8: Bloodwork for Lyme. Won't have results for at least three days. I call my GP's office to see if they've made the Rheumatologist appointment yet. The request was sent, but it can take a long time. She offers to give me the specialist's phone number, which I take. I promise I won't heckle.
 Late this evening, before bed, we notice that not only my left ankle, but my left foot has also started to swell monstrously. This is getting kind of ridiculous.

6. The near future: Barring any phone calls on the bloodwork, an MRI on May 14; app't with GP May 15; back to cardio clinic May 21. There may be more stuff in there. Nice, pleasant ordinary stuff I hope.


And now I must take a few moments for an Ode to Mike. This man is incredible, and a damned good nurse, too. He has been doing so many things for me that I just can't do, makes sure I have what I need, modified the house for me, drives me everywhere, even has become a chef! His own pursuits and pastimes have been put on hold and he's been focussed entirely on me for the last month and a half. Some may say it's his duty, but I say it's just who he is: an extraordinarily caring and loving guy. I feel so guilty about the extra pressures put on him. I just hope that someday down the line we can do another hike in New Mexico or a walk in England. That would seem like a miracle to me.

Monday, 29 April 2013

Still a Fool, but....


....not a Walkin' one. As some of you know from previous blog entries, I had to skip the Martian Marathon due to knee issues. Well, it developed into something a bit more than that. I'm going to lay out the timeline here, without theorizing or emotional comments,


 
 
1. March 10, 2013: PR'd at the Corktown Race 5K.  Training for the MM going well. Then I begin to get a pain in the back of my left knee, but only when in full flexion.
 
2. March 28, 2013 : I contact my physiotherapy clinic. No pain when racewalking, but want the knee checked as I can't kneel on it at all. Begin lots of ART work (Active Release Technique: really a great therapy.). Through this and subsequent sessions including a new stretching program, my legs (particularly my hammies) feel far more flexible than they have in years. The knee pain continues. I ice frequently. In taper anyway, so not a lot of walking needed.
 
3. April 4, 2013: My left knee begins to swell up quite alarmingly and get quite hot. I have a very mild off-and-on feverish feeling; general malaise. I had already booked a doctor's app't for Monday (annual checkup kind of thing), so I decide to wait until then to have it checked. Limping pretty steadily now. Ice and Ibuprofen hand-in-hand.
 
4. April 8, 2013: My doctor orders x-rays and an MRI. I get the x-rays done right away. We have to wait for MRI appointments, usually a long time. He suggests that the PT folks can also help with the swelling and pain, so I return for a few sessions. Hurts to sit in car.
 
5. April 13, 2013: The Martian Marathon. I'm a no-go, but a friend picks up my shirt for me. (He did well in the 10K). Up until now I had considered going as a volunteer, but by race day can't stand very long. Pain at night is the worse. I sleep, at best, for two hours at a time before waking up with my whole left leg in real agony and the other one quite uncomfortable. Ibuprofen is my new best friend. Mornings are bad, and just trying to get out of bed is a study in pain. I do find that I get what I have been calling a "sweet spot" or "golden hours" from about 3:30 - 9:00 pm when I don't feel too bad and my mobility is better.
 
6. April 14-18, 2013: Things worsen. My left ankle now is swelling quite largely. I have to cut down socks to fit and "rebuild" my NB 730 so I can fit that foot in. Even sitting actually hurts my leg. Getting up from a sitting position very painful for first couple of seconds. I know I won't be able to sit on a plane. We cancel our long-anticipated trip to Hawai'i. When I call to cancel our full moon tour with the Pacific Whale Foundation, I decide to adopt a sea turtle (I really wanted to swim with the turtles). His/her name is Kuhukuku (Hawai'ian for turtle-dove; the word sounds like the dove's call). Here's a pic of him/her (too young to identify as male or female yet):
 
 
7. April 19-24, 2013: Bad to worse. Both of my shoulders hurt a lot, and that original "back-of-knee" pain is now niggling at my right knee. Swelling in left knee and ankle unabated, even after icing. Range of motion in knee and shoulders very limited. I "walk" (limp severely) like someone 110 years old and can't go far.  Hawai'i would have been a big mistake if we had gone. I get a TENS machine. It helps some with the shoulder pain but not the root problem. I have discovered that floating in a pool feels pretty darned good. 
 
8. April 25, 2013: Doctor's appointment. Bloodwork  and bone scan ordered and an appointment with a Rheumatologist scheduled. [Still awaiting my MRI]. He prescribes a short course of prednisone for the inflammation. I get the bloodwork done the following morning. Reviewed the fact that I had a brush with drug-induced lupus in my youth (late 70s) after a massive allergic reaction to sulfa drugs.
 
9. April 29, 2013: The prednisone kicked that inflammation in my knee right down and I have been able to actually sleep at night with no pain! No longer the "bed of pain". I also stopped the Ibuprofen while on prednisone and have found I don't need it now with the swelling down. With the swelling down, some splotchy bruising showed up on the back of my left knee. My mornings are still stiff, but getting out of bed is no longer as great a problem. The ankle swelling is still there, but perhaps not as great. Shoulder pain persists. The pain in the back of the knees is still there, especially when walking limping, but my "sweet spots" of the day are so much sweeter lately. I can put on my own socks. I have developed a dry cough: every little seemingly insignificant thing gets noted at this point.
 
10. The near future: Bone scan booked for May 6th. The prednisone runs out in a couple of days. Back to see my doctor after tests all done. I can call before that if needed. Waiting on MRI and will check when my specialist appointment is.
 
 
 
So there it is in white-and-black (and some red). I'm in a pretty good place right now; still lots of pain, but nowhere near what it was, and I'm sleeping at night! Of course, I've had endless theories running through my head, but this has really made me think on a day-to-day basis. I know I may never race again, but I'll be really happy if I can just walk normally. I've rediscovered a love of reading and have been devouring books by the pile; am doing some astronomy with my own little 4" reflector and have embarked on a study of anatomy which I've wanted to do for a long time. Learned some new card games and continue with board games and computer games (we play them together: two heads are always better than one in adventure games!). Focus shifts; life continues.