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Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts

Thursday, February 7, 2013

Disability: The Game

I've been pretty sick this past week, spending every afternoon in bed, lots of migraines, lots of fatigue, and no mental energy. It reminded me that I've been meaning to post "Lyme Disease: The Game!" that a friend of mine wrote. It can easily be adapted to work for any chronic illness or disability and has the advantage of being even more nuanced than the much-loved "Spoon Theory." Welcome to living with a chronic health problem!

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Lyme Disease: The Game!
no fun at all for ages 8 to 108

You need:
a die from a board game in the closet
a fleshy, corruptible body
a spirit to be crushed

SINGLE-PLAYER RULES

You contracted Lyme disease. Roll the die to see if you notice.

>3: Congratulations, you got a classic red ring tick bite. Go to the doctor and get antibiotics, spend 2 weeks feeling awful, then get on with your life. FOR NOW.

3 or lower: You have no external marker. Disease remains unnoticed and untreated. Please progress to Chronic Lyme.

CHRONIC LYME

Spirochetes have colonized your body in ways largely impenetrable to your immune system. Now the fun begins! You begin experiencing diverse symptoms: severe muscle/joint aches, incapacitating fatigue, mental fog, digestion problems, temperature and drug sensitivity, dizziness/fainting, AND OTHER FUN THINGS. You cannot function properly; something is clearly wrong. Go to the doctor and roll the die to see what they diagnose.

1: "[Patient name] is a young girl clearly in need of reassurance." You got a sexist jerk doctor. No treatment. Continue to suffer until you can afford to see another doctor.

2. Battery of tests show nothing. Doctor shurgs. Given vitamins and/or stress management pamphlet and/or psychiatric recommendation and sent on your way. Continue to suffer until you can afford to see another doctor.

3-4. Battery of tests show nothing. Doctor diagnoses arthritis, IBS, or some other minor, unrelated condition. Receive ineffective treatment for wrong disease. Continue to suffer until you can afford to see another doctor.

5. Battery of tests show nothing. Doctor diagnoses Chronic Fatigue Syndrome. Receive largely ineffective treatment for symptoms but not cause of illness. Continue to suffer until you can afford to see another doctor.

6. Doctor actually believes in the existence of Chromic Lyme AND recognizes symptoms AND knows proper test to administer. Chronic Lyme diagnosed. Some kind of punishing antibiotic regimen plus other treatments administered, effect unclear. Proceed to "Daily Lyme Funtimes."

DAILY LYME FUNTIMES

Wake up. Roll the die, then multiply by 3 to get the number of pills you must take today. Roll the die again to see what kind of day it is.

1: Very bad. Stay in bed all day, hardly moving due to pain and fatigue.

2-3: Bad-ish. Stay in bed all day, but at least you can read or watch TV.

4: Meh. Stay in bed most of the day, but can get up to shower or fetch some minor item up a flight of stairs. Probably need a nap afterward.

5: Okay-ish. Stay in bed most of day, but can do some minor tasks such as wash dishes or play a video game as long as you take it easy and don't stand or concentrate for too long.

6. As good as it gets. Go crazy and do something wild, like walk to the mailbox up the street and get the mail, or be driven to the pharmacy to pick up drugs. If you are in advanced stages of recovery, you may even be able to eat in a restaurant or go to a movie theater PROVIDED someone can drive you and you don't have to walk too far from the parking lot. See next section for details.

ACTION POINTS!

Every day that you roll a 4, 5, or 6, you may spend Action Points! Multiply by 3 to get your number of points. The following is an incomplete list of actions you may choose to take with your points.

Shower: 6 points

Prepare a meal more complicated (but not much!) than cereal of microwave meal: 6 points

Concentrate of something (typing/writing, book more complicated than "beach read," balancing a checkbook, conversation with someone more complicated than "beach read") for 30-60 minutes: 6 points

Go up a flight of stairs: 6 points

Stand in a short line, such as at bank or pharmacy: 10 points

Drive yourself somewhere extremely close, such as bank or pharmacy, and back home: 12 points (may be impossible depending on exact symptoms and driver's license status)

Sit up for extended period, such as at dinner or movie in public: 12 points

Take public transportation (bus) somewhere extremely close and back again: 18 points (probably impossible due to large amounts of standing and walking required)

Actions involving more than one set of points will cost you both! For example, going up a flight of stairs to shower costs 12 points. Having to take the bus to the bank and then stand in line there costs 28 points.

"But I don't have enough points to do everything I need to do today!"

Tough. Your choice is as follows: either do without whatever it was or "borrow" points from tomorrow. If you have the good fortune to roll a high number tomorrow, your "borrowed" action points are deducted from your point total. If you don't have enough action points to borrow, you go instantly to Very Bad and must spend all day in bed suffering. This continues every day until you can "make up" the points you borrowed, for up to one week.

Example 1: You roll a 4 and have 12 action points on Monday. You spend 12 points going up a flight of stairs to shower because you really stink. What a relief! But then your friend who lives cross-country calls and you really want to talk to her. You spend another 6 points talking on the phone for an hour. Tomorrow, you roll a 4 for 12 more action points. Due to your good luck, you simply deduct the 6 points for the phone call. You now have only 6 points to spend for Tuesday. Going up the stairs is possible, but another shower would be a bad idea.

Example 2: You have some business to conduct in person at the bank. You wait until you finally roll a 6 for 18 action points on Friday. Fortunately, the bank is very close and you have a car and a driver's license and a handicapped parking permit AND you feel as though you would not endanger yourself or others by driving today. You spend 12 points driving to the bank. But unfortunately, the bank is busy on Fridays and you have to stand in line for another 10 points. You overspent by 4 today. On Saturday, you roll a 3 when you wake up for no points. You are screwed. You spend all day in bed in extreme discomfort. You cannot shower or do anything else requiring action points. On Sunday, you again roll a 3. You still cannot make up your action points. You spend all day in bed suffering again. Finally on Monday you roll a 4 for 12 points and can make up the points you overspent. You can finally shower, but if the shower is up a flight of stairs, be prepared for more Very Bad days.

WINNING THE GAME

You don't. The game continues indefinitely. You may progress to the point where you are essentially rolling a 6 every day. You may even progress further than that. But there is no guarantee. No matter how good you feel, you will always know it is possible to do too much and collapse. You will always remember the Very Bad days. You will never know spontaneity again. You will never truly feel confident that you will be able to support yourself or do basic life tasks for the rest of your life.

Game is over when you die.

MULTIPLAYER

Everyone plays alone. However, you will undoubtably be forced in the course of playing to affect the lives of those around you, particularly your spouse or family members who will be forced to care for you when you cannot care for yourself, which is almost always.

Subtract 2-10 action points every day for every caretaker you are forced to rely on who is abusive in some way.

If you have no access to caretakers of any kind, I don't even know what to tell you. You are already playing a very different game.

EXTRA HANDICAPS

For added challenge and absolutely no added benefit, choose one or many of the following handicaps while playing:


  • other pre-existing serious health problems (subtract 2-10 action points every day!)
  • very young (15 or younger) so no one takes you seriously
  • old age (65+) so no one takes you seriously (and subtract 2-10 action points every day!)
  • poverty
  • live in isolated rural area with few doctors and far distances to do life tasks
  • live in large city with lots of health-destroying pollution and inability to own a car
  • live in backwards country without guaranteed health care for all humans


HAVE FUN, KIDS!!!

*  *  *

Thanks to CM for allowing me to share this. I hope the day comes when you roll nothing by sixes day after day after day!

Wednesday, January 2, 2013

Things I Liked in 2012

I'm sorry to say that 2012 wasn't such a good year. The first few months I was still suffering a great deal from my concussion from the previous summer and I also managed to sprain my dominant hand in January and one of my ribs in February. While I started feeling like a human being again in March, when I began hanging out with horses, I was still very adversely impacted by bad weather. Unfortunately, we had a long, wet, miserable spring that just wouldn't quit--2012 is going down as the 7th wettest year in Seattle on record! When the sun finally came out at the end of July, I felt so much better and stronger! I felt so good, in fact, that I went swimming in the lake with Mr. Gorgeous, hurt my back, and spent the next five weeks on crutches. I had a great trip to Florida at the very end of September, but there was the inevitable backlash from the exertions of the trip that meant a week in bed. Then, shortly after I was finally recovered enough from my injury and my trip to have, at last, another riding lesson, I came down with a virus that eventually led to a stomach infection and I ended up spending two months in bed and only just barely escaped being sick on Christmas! While there were good days scattered throughout the year, 2012 was not a winner.

Syd: A handsome hunk of horseflesh!

The single best thing that happened in 2012 was my decision to get involved with horses. Spending time with horses has been an incredibly positive experience. When I'm with Drifter, especially when I'm grooming him, I forget about all my health issues. My mind goes quiet, I cease to be a migrainuer, all the difficulties presented by my disabilities melt away, and I'm just a human soul communing with a horse soul, spreading love through touch. I'm proud of the fact that I also have some natural ability in the saddle and am excited about being able to resume riding soon. But the riding is really a bonus; the true medicine is in the sensory pleasures of the stable: the sweet smell of hay and horse manure; the snorts and bumps and knickerings of the horses in their stalls; the sound of rain on the metal room; the warmth of the large, solid bulk of my drowsing horse in the cross-ties; the sweep of my arms as I run the currycomb over my horse's body; massaging Drifter's face as he presses his nose against my chest and closes his eyes with contentment.

Drifter.

Dogs, of course, were also a postive part of 2012. I acquired two new dog-sitting clients in addition to my longtime collie friend, Mr. Gorgeous. Lady the Golden Retriever was lovely, but Sweetheart the German Shepherd has been very special! I love her cheerful, goofy, playful personality and, of course, she's very handsome. Dog-sitting other wonderful dogs has also served to make me appreciate my own dog even more. She is absolutely the perfect size, the perfect energy level, and has the perfect personality for my needs! Abbey has been a considerable source of comfort all year long and makes me smile every day.

Mr. Gorgeous looking, well, gorgeous.

I love how much fun Lady still gets out of life despite being old and arthritic!

A (rare) serious portrait of Sweetheart. It wasn't easy to get her to sit still and just look at the camera because she kept wanting to bring me toys!

My own dog at play...

...and at rest.

It wasn't just dogs I met in person that brought me pleasure this year; I also enjoyed following the exploits of a number of dogs on the web. Some of my favorites:

Love and a Six Foot Leash
The handsome fellows in this photo are Snickerdoodle a.k.a. Doodlebug a.k.a. The Dude and his brother, Chick, of Love and a Six Foot Leash, a blog and Facebook page. The blog used to be largely devoted to the tales of Chick (who takes over the blog on Fridays) and the various foster dogs that came through his house, but then along came the Dude. Everyone loved the Dude, including Chick, and so now he's what they call a foster failure: home for keeps! So the blog is no longer focused on fostering, but there are lots of well-written updates about dog training, dog sports, and the adventures (mostly napping) of Chick and Doodlebug, all accompanied by beautiful photographs.


Bah Humpug
Most of the dog blogs and Facebook pages I follow are devoted to pit bulls and pit bull advocacy groups, but I also have a soft spot for pugs and the corgis. I was delighted, then, to come across this lovely little blog devoted to pug drawings! Charming, simple, and updated several times a week, these delightful doodles always make me smile.

Maddie the Coonhound
Maddie is a coonhound. She gets photographed standing on things. It's a simple concept, but the results are strangely elegant, funny, and poignant. Maddie, of course, is very handsome, and her standing-on-things skills are quite amazing (a coonhound balancing on the top of a tomato cage!), but the artistry of the photography is impressive, too. It reminds me, in many ways, of William Wegman's photos of his Weimaraners. I know she's only standing on the floor in the photo above, but it's a fabulous image. Big kudos to Maddie for standing so nicely and to her owner for capturing her in the act!

Betsy & Pups
I love the "Betsy & Pups" Facebook page. It all started back in January when a massively pregnant pit bull was brought into an Atlanta-area shelter just days before she was due to give birth. The foster parent who took Betsy in started up a Facebook page to chronicle the birth and growth of Betsy's ELEVEN puppies. The puppy photos and updates and live streaming video were all great, but I've been extremely happy that while Betsy and Betsy's puppies have all since been adopted, the foster mom has continued to post photos and updates of the foster dogs, many with medical needs, that come through her house. The photo above is of two of her own dogs spooning with a recent foster and is quite typical of the beauty, charm, and "awww!" factor of the images posted! Current foster pup Billie has brought many a smile to my face in recent months!

Sarge Wolf-Stringer
Another Facebook page devoted to dogs that made me smile this year was the one belonging to Sarge Wolf-Stringer. Sarge himself has passed on, but Mary Todd Lincoln, Martha Washington, Nancy Reagan, Junior, Fannie, and El Capitan remain devoted to reducing prejudice about pit bulls. Well, that is, when they can fit it in between searching for Mary Todd Lincoln's neck, band practice with Axis of Weevil, exorcising Cappy's demons, Martha's work as a therapy dog, Air Out Your Pug Days, cheering on UF, listening to rap music, and cultivating charming personalities. One of the highlights of my year was actually getting to MEET the pack in person while I was in Florida! That's me in the photo with Mary Todd and Martha, very happy that the internet and my love of dogs has, in fact, expanded my world and my friendships.

Dog Shaming
And finally, when I had exhausted all of my dog blogs and Facebook sources and I still needed a laugh, I could turn to the weird wonderfulness that is Dog Shaming.

* * *

I'm not able to read as much as I used to, but I suppose I still pack away more of the printed word than most folks even though I can no longer whiz through books at pre-migraine speed. These are a few of the books that mattered most in 2012:

Gillian Flynn's "Gone Girl" has showed up on a lot of "Best Books of 2012" lists--deservedly so! I gobbled this book up in one day, pausing only for meals, and the moment I finished it, I flipped right back to the beginning and started it again! There's a big twist in the middle, one that I didn't see coming, so once I knew how everything turned out, I had to go back and read it again, this time knowing that one of the narrators was unreliable! I received Gillian Flynn's two previous novels, "Sharp Objects" and "Dark Places," for Christmas and can report that they are also page-turners. I read "Sharp Objects" in a single sitting, not even pausing for meals, because I was so committed to finding out what was going to happen. I'm usually the sort of reader that prefers character development to a lot of plot, but I found her fast-paced mysteries to be highly engaging. I would add that the sophistication of Flynn's stories have evolved which each book, from the crude violence and somewhat clumsy characterization in "Sharp Objects" to the much more subtle psychological evil of the characters in "Gone Girl." I'd definitely recommend her work, and not just for fans of mysteries and thrillers!

Annie Proulx has been one of my favorite authors since I first read "The Shipping News" back when I was in high school, but I've felt that her work has gotten more caustic in recent years and that maybe she needs an editor to say "no" to her from time to time: some of the short stories in recent collections have seemed self-indulgent to me. I wasn't in the mood, therefore, to read Proulx's work when I received "That Old Ace in the Hole" last Christmas. It wasn't until this summer when I finally got around to it, but I'm glad I did, because it's one of her wry, quirky, but loving looks at a seemingly unlovely region, in this case, the Oklahoma Panhandle. (The book was published in 2002, perhaps accounting for the less bitter tone than some of her more recent work.) I love the vividness of Proulx's writing, her utterly original similes, and her manner of capturing the nuances of character, dialect, and place through lively language. This is not a fast-paced book, being much more about creating a portrait of a place and its people than plot, but I found it so satisfying that I started it again from the beginning the moment I finished it. Fans of "The Shipping News" should definitely check it out.

I may have reread both "Gone Girl" and "That Old Ace in the Hole" immediately upon finishing them, but that's nothing compared to the half dozen times AT LEAST that I read "The Plague and I" this year. "The Plague and I" is Betty MacDonald's account of her year spent in a tuberculosis sanatorium in the late 1930's. Earlier generations may know Betty MacDonald's book "The Egg and I," while younger readers may have enjoyed her Mrs. Piggle-Wiggle children's series. I grew up loving "Nancy and Plum," her romantic children's story about two orphaned sisters and their escape from evil Mrs. Monday's boarding home, so I was familiar with her name, if not her adult writing. I found myself picking up "The Plague and I" on long, dismal, discouraging afternoons when I was feeling too sick with fatigue and migraines to get out of bed and I found myself longing for an old-fashioned "rest cure" in a silent, spotless, dimly-lit nursing home where the bed would always be the right temperature, the pillows always the right degree of plumpness, and quiet and kindly nurses would massage my temples and be able to intuit exactly what delicacy might tempt my poor appetite. I find Betty MacDonald's humorous account of her months on bed-rest in the frigid sanatorium with the equally frigid nurses to be nearly as soothing as the my fantasy rest cure, despite the fact that she was always cold, had many bizarre and unpleasant roommates, desperately missed her children, and was faced with the terrifying possibility of death. "The Plague and I" has helped brighten many of my worst days and I'm thankful to have it by my bedside for when I'm feeling my sickest.

* * *

Because I haven't felt well for much of this year and reading can be difficult for me when I'm not feeling well, I've ended up watching rather a lot of TV. Since we have no television in my house, I get my TV shows through the internet, either on Netflix or Hulu, which is nice, since I means I can watch older shows. The downside, of course, is that you can gobble up a series in just a few days if you get really hooked on it!

One of the series that I got hooked on this year was "Battlestar Galactica." I'd heard friends rave about it, but I have rather nerdy friends and assumed that it was merely a sci-fi show, which is not a genre I'm particularly interested in. (I've found that I'm rather partial to spy shows.) I needed something to watch, though, and by then my sister, who is even less of a sci-fi fan than I am, was watching it and loving it, so I gave it a shot. And was hooked. It turns out that underneath the veneer of spaceships and the cyborgs, the show is really about people, about how we respond to crises, how governments respond to crises, and how we define our enemies. I finished all but the last two episodes of "Battlestar Galactica" months ago; I am still waiting for the perfect time when I'm not too sick or too tired to finally let the series come to an end. It's been riveting entertainment and a great way of filling many of my evenings this year!

It's absolutely no surprise that I enjoyed "Downton Abbey." I like any book or movie or TV series that gives me a sense of what it was like to live in a different time period and I often watch the marvelous 5-hour BBC "Pride and Prejudice" miniseries when I'm not feeling well. I'm also well-versed in British literature (not to mention Edith Wharton and Henry James), so this series wonderfully brings the world I know from books to life. (I also recommend the 2002 miniseries, "The Forsyte Saga," for its ability to make a bygone age seem real.) I liked everything about "Downton Abbey": the clothes, the houses, the way it clearly illustrated the roles people were forced to inhabit, the drama between the characters, and the way Anna said the name of Mr. Bates!

While looking for shows to watch, I stumbled on the British police drama, "Luther." I don't generally care for extremely dark and violent shows and I don't much care for suspense, either, but I was so impressed by Idris Elba as the title character that I was extremely disappointed that the show only ran for ten episodes. When Luther ran his hands over his head in stressed vexation, I felt like I was watching a real person, not an actor. I also love the way he pronounced the name "Alice"!

Somewhat less dark (or at least more humorous), and therefore even more to my liking, was the new British show, "Sherlock." Cleverly done and well-acted, I am eagerly awaiting more episodes! I haven't read any of the original "Sherlock Holmes" stories in ages, so all of the mysteries are fresh to me and I like the character development very much. The tie-in to the "Sherlock Holmes" stories series also has the benefit of enabling me to keep a sense that the show is fiction. Overly-realistic police/detective dramas can bother me (which is why my enjoyment of "Luther" was so unusual), so I appreciate that slight distance that allows me to enjoy how well-written and well-acted the show is!

* * *

While 2012 might not have been a great year in terms of my health, it was a fantastic year for photography. I continue to enjoy my DSLR, which I purchased in the fall of 2011; I have taken 10,4588 photographs so far! I've taken a great many photos of the plants and flowers that can be found near my home, so it was with delight that I discovered the power of my 100 mm macro lens to take photographs of insects and other animals. It started when I came across a bee on a cornflower. I was amazed by the results and began photographing bees whenever I found one. As fall came on and the local spiders grew larger, I turned my camera on them, too, and was excited to photograph banana spiders and yellow garden orbweavers in Florida. The spiders may have been more intriguing than attractive, but I was utterly mesmerized by the beauty of the blue and red betta at Sweetheart's house and took dozens of photos of sunlight shining through the fish's trailing fins. Getting the opportunity to photograph a shrew-mole in my lawn this spring and successfully staking out hummingbirds visiting our fuchsias were highlights, but I think my very favorite (non-bee) animal photo of the year is the one I snapped of a Florida soft shell turtle sunning itself on a road in St. Marks National Wildlife Refuge in the Florida panhandle!

You can find more bee photos here...

I've gotten rather obsessed with photographing spiders, but haven't gotten around to posting an album of those photos yet. Here's one of my photos of a banana spider.

I have more betta photos in this album...

This photograph of a Florida soft shell turtle is one of my favorite animal photos from 2012!

* * *

I was very fortunate in 2012 to be able to travel. Since the migraines began in 2009, my world had grown very small. Therefore, it was wonderful to have a chance to have an overnight excursion to San Juan Island and then, just weeks later, to travel all the way to Florida! I hadn't thought air travel would be possible with my sensitivity to pressure changes, but with medication I managed and therefore got to see some of my favorite people AND photograph some fantastic wildlife. I'm looking forward to getting to travel just a little bit in 2013!



You could hardly find two places less alike than these two extremes of the contiguous United States, but I enjoyed my visit to both!


* * *

Striped socks and a
striped dog can help
make things better!
So while 2012 won't go down in history as one of my favorite years, it still was a year full of dogs and horses, of internet entertainment of all kinds, of absorbing books, interesting travel, and lots of very cool photography. I'm hoping in 2013 to manage to be well enough to get back in the saddle and stay there; to travel to Los Angeles and, hopefully, to Arizona, too; to draw dogs and photograph dogs and dog-sit dogs; to learn all the ins and outs of my camera, continue building up my portfolio, and expand into the realm of stock photography; to be clear-headed enough to finish a number of blogs I have in draft form and to write down the many others that are floating around in my head (especially when I'm awake in the night); and, with luck, feel better more often than not!

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Sunday, September 23, 2012

Injuries Afoot


This pretty scene doesn't LOOK dangerous...

The time has come at last to relate the tale of the injury that has had me on crutches for a month now. Part of why the story has been so long in coming is that it took more than three weeks to determine what the injury was. There was no doubt about how it occurred, however. 

The collie and I pose for a post-swim portrait.

It was the first day of my most recent gig looking after Mr. Gorgeous and the weather was exceptionally fine. His owners informed me that their teenage son was routinely convincing Mr. Gorgeous to swim in the lake for exercise and that I was welcome (though not required) to continue this program. Mr. Gorgeous' lakeside house has its own private beach and dock and is a very pleasant place to hang out, especially on a sunny day, so I put on my bikini, strapped Mr. Gorgeous into his lifejacket (in case his aquatic ambition was greater than his stamina), and we made our way down the steep hill to the lake shore.


The rocks that caused all the trouble.

The shallows of Lake Washington, like most lakes and rivers in this area, are lined with stones, most about the size of the palm of your hand, and usually sport a slippery layer of algae. I waded in with Mr. Gorgeous (he was feeling a bit uncertain about the size of the wind-pushed waves), an activity that required quite a bit of sliding and gripping and constantly readjusting my balance as I attempted to walk into the waves on those slick rocks. Mr. Gorgeous ultimately declined to go beyond where his feet could touch, but since I'd already gotten wet and adapted to the chilly water, I decided to go swimming myself. After splashing around a bit and jumping off the dock, lying in the sun to dry off and then sitting in the shade to admire the view a bit longer, Mr. Gorgeous and I made our way back up the steep hill to his house, where I proceeded to read outside on the chaise lounge for about an hour, and at last went in for a long, lovely shower. I had just come back downstairs, clean and happy and ready for dinner, when I put weight on my left foot and experienced a horribly sharp stabbing sensation in my foot near the ankle. My pain scale runs pretty high--scratching my eyeball and having a migraine so severe I thought I might die top the list--but this pain merited a full 9 out of 10. It made me exclaim and jump involuntarily even if I knew I was going to happen. I found I could hobble on the outside of my foot without causing that stabbing pain, but something was clearly wrong. However, the foot wasn't swollen or discolored and had full range of motion when I didn't have weight on it, so I figured it wasn't fractured. I took some Advil, followed the tenants of RICE (rest, ice, compression, elevation), and decided to see what the morning would bring. When I experimentally put weight on it the next morning, the severe stabbing pain was still present. So I called in the cavalry and the cavalry brought crutches. It was eighteen days before I put full weight on my left foot again.


I've actually had quite a bit of trouble with my feet and legs over the years, but never had an injury that required crutches. I was born with short muscles in my legs, to the point that I was a tiptoe walker until I was about six. When I was eight, I developed inflamed growth plates in my feet. This happens when the bones of the leg grow faster than the muscles, causing the tight Achilles tendon to put tremendous strain on the not-yet-calcified growth plate in the heel. Because of my tight calves and hamstrings, I was already predisposed to this condition and then it didn't help that I grew like a weed: I shot up 10 inches in less than three years. Until I stopped growing and my growth plates hardened in my early teens, walking on hard surfaces, walking moderate distances, or running more than a few yards (the condition became apparent when I joined the school's girls basketball team as a third grader) caused pain severe enough that I was forced to limp or walk on tiptoe. Something as simple as a trip to the mall--requiring lots of walking and standing on hard floors--could become an achy, agonizing experience.

The big toe on my left foot is turned out about 31° and is starting to underlap my second toe.

It was while seeing a foot specialist as an eight year-old that I discovered I had another anatomical anomaly: a bunion. A bunion occurs when the big toe starts angling toward toward the second toe, causing first joint to protrude outward. The bunion can get swollen and painful. My bunion is genetic in origin and has gotten more severe and painful over time, though it's better now than when I was working ten hour days on my feet! I've largely found it to be an amusing abnormality, almost like a party trick, though it does make it difficult to find shoes, especially high heels, that will accommodate the bunion's bulge. The way it is deforming my foot also contributes to the fact that in terms of length, my left foot is a full size smaller than my right!

My knees do not line up over my feet. The left foot turns out at approximately 42° and the right at 28°

Another structural anomaly that has present since I was little is that if my knees are pointing forward, my feet turn out. It's more pronounced on the left side than the right. It makes me ill-suited for activities like riding a bicycle that require the feet to point forward because my knees are then forced to turn in. When I pedal a bicycle, my knees cross over the centerline of my body! Between the way my feet and knees turn and my short leg muscles, I've got a bit of a funny gait, most pronounced, again, on the left--I sort of swing my leg around instead of picking the foot up and putting it down in a straight line. It means I'm not cut out for running and I simply physically cannot properly execute the "frog kick" component when swimming breaststroke! None of these imperfections have been disabling (though they have often been painful and placed limitations on my physical activities and my shoe choices over the years), but over time I've come to regard my legs and feet, especially the left side, as inferior products, only adequate as a means of getting around.


And then there was the SI issue. I tentatively took up snowboarding when I was in my teens and one time, when I was fifteen, I took a hard fall on my tailbone on the infamous "Cascade concrete," a surface more akin to ice than snow. I remember sitting there, slightly shocked, making an assessment of my body, and thinking, "Wow, I think I just really hurt myself." But all the parts worked when I tried them and so I got up and continued to snowboard poorly. (Snowboarding poorly is still a great deal of fun, for the record.) My initial assessment had been correct, however. One, I'm pretty sure in retrospect that I fractured my tailbone. For a couple of months, it was too painful for me to sit on directly, but I was too embarrassed by the injury's location to see a doctor. Two, the jarring of the fall put my sacroiliac joint out. It spent fourteen years locked in a twisted position that, unbeknownst to me, was the source of my constant low back and hip pain. I had so many other unpleasant things going on in my life during those fourteen years that the pain in my hips was never a priority. Another reason I didn't attend to it was that I was quite used to having pain in my lower body by that time and I figured it was another manifestation of my oddly angled feet and unusually tight muscles. By the time my physical therapist diagnosed the problem, the SI position was extreme enough that my left leg was more than an inch shorter than my right! Walking around on legs of different lengths is really hard on the body, especially the back. The SI problem is was also responsible, I just learned, for the fact that my left leg is much skinnier than my right. I first noticed this phenomenon when skinny jeans became fashionable. Pants that were tight on my right thigh were loose on the left, so much so that I was compelled to measure the difference: my right thigh had a circumference one inch greater than that of my left. I've lost muscle mass in my right leg since the migraines have forced me to adapt a sedentary lifestyle, but my right calf muscle, for example, is ¾ of an inch larger in circumference than my left. This left-side weakness is the result of long-term irritation of the sciatic nerve.

What does all this medical history have to do with my recent foot injury? We'll get to that soon!

So there I was, dog-sitting and on crutches. I remember, as a kid, thinking that they looked like fun, and maybe crutches are fun if you're young and spry and full of boundless, squirrelly energy, but I found them to be incredibly hard work. Had I not been building up my arm strength through working with horses, I might not have been strong enough to have used crutches at all. The first few days were especially painful, both under the arms and in the palms of my hand, which is where you are suddenly bearing your body weight. It took some time to figure out the rhythm and I failed to negotiate a step my first day and fell hard, resulting in large, ugly bruises on my knees. (After that I carefully made my way up and down stairs by stepping on the outside of my foot.) Another major inconvenience of crutches is that you can't carry anything! That meant I had to hobble around on my foot in order to fill bowls of dog food or glasses of water until I realized that, thanks to the hardwood floors, I could maneuver around the main level of Mr. Gorgeous' house in a wheeled desk chair. Still, it was hard work to get anything done and I couldn't wait to see my PT so she could assess the foot and start treatment.

One of the bruises I sustained while learning to use crutches!

Unfortunately, while I was en route to my PT appointment, my physical therapist tripped and fell, breaking her collarbone. She waited long enough for me to arrive so she could give me the bad news and then she was off to the ER. She's been out of commission this whole time, so I went to see a different physical therapist. He discovered a new symptom that I hadn't been aware of: my injured foot was shockingly cold. He said that I needed to get it X-rayed to make sure there wasn't more extensive damage, such as a small fracture, than I had suspected. So off I went to my primary care doctor's office. The nurse practitioner was also startled and concerned by how cold my foot was. I had pulses in my foot, so it meant that I was still getting blood flow, but it was a worrisome symptom. X-rays revealed nothing more than a bone spur in the area of the foot that hurt when I put weight on it, but my doctor and my nurse practitioner decided someone with more expertise should take a look at it.

As you can see in this X-ray of my foot, there is a substantial space between the cuneiform bone (the blocky bones that connect to the long metatarsals that go out to the toes) connected to my big toe and the 2nd and 3rd cuneiforms. This because my foot is deformed by my bunion, but the podiatrist thought it might represent a dislocation.

Unfortunately, the podiatrist they sent me to was a quack. He was utterly unqualified to diagnose the injury, though he certainly tried. It would have been better off if he'd simply said that he didn't know what the problem was. He took more X-rays and announced that while perhaps there was a dislocation, it was hard to know because it might just be the way the bones of my foot are aligned because of my bunion and the only way to know for sure would be to compare it to a healthy X-ray of my foot. His recommendation was for me to wear a boot 24/7 and not put any weight on it for the next four weeks and that it should fix itself. For good measure, he would also inject the nerve in my leg with lidocaine, creating temporary paralysis of the foot. My mother was not about to let him inject a nerve (a procedure not without risk) without a full explanation of why there might be a nerve problem in my foot, so we consented to the boot and hustled out of there. In one respect he was right: the foot did warm up when it was immobilized by the boot and I think it was ultimately good for it to be stabilized. But the boot was really hard work. It only weighs a little more than two and a half pounds, but hauling that extra weight around on the end of my leg while on crutches and unable to put any of my weight on it was exhausting. By the time I stopped wearing the boot, I'd been exercising so much just getting myself from place to place that I had lost three pounds!

My heavy boot included air bladders at the back of the heel that I inflated with the clever little blue pump to create a snug fit.

My mother had been leery of sending me to a podiatrist in the first place, but we had trusted my doctor's recommendation. For the next assessment, we decided to go to the experts: the foot and ankle clinic run jointly by the university hospital and the excellent regional trauma hospital, but it was a week before they could see me. I spent several stressful days calling various orthopedists to see if anyone could see me sooner and worrying about the undiagnosed state of my injury, especially if it were indeed a dislocation. Dislocated bones in the foot can present only subtly on X-rays, may only hurt while weight-bearing, and cause coldness in the foot: in other words, I had all the symptoms. The podiatrist's claim that a month in the boot would cause things to straighten out on their own was just plain wrong: dislocated bones need to be put back in place and dislocations in the mid-foot, where I was having my pain, often require surgery to correct. I wanted a definitive diagnosis very badly! My weekend trip to the San Juan Islands helped me relax some and we had set things up in the house to make it easier for me to move around with my boot on, but I was so happy when the day of my appointment at the specialty clinic finally came.

That extra pointed tip on my navicular bone was deemed responsible for my foot pain. 

After a very thorough exam and more X-rays, the diagnosis came back as this: I actually was suffering from two injuries. The pain in my foot was caused by the bone spur and the coldness was being caused by pressure on a nerve because of a back injury. Slipping around and using my feet to stabilize myself on the rocks had caused hyper-extension of my foot and sent the bone spur poking places that it shouldn't and apparently in my efforts to stay balanced, I'd hurt my back, too. I hadn't felt any back pain, but after I started standing on my foot and walking just a little bit, there it was: in my lower back, on the lefthand side, right next to the spine. Because I'd been on crutches since the morning after the injury, I'd never realized it was there. The specialist prescribed physical therapy to address the back issue, which would relieve pressure on the nerve and should alleviate the coldness, the flatness of my arch (it had collapsed), and the occasional burning sensation in the foot. He advised me to stop wearing the boot, since it would likely start causing strain-related problems that would outweigh the benefits, and to carefully begin standing and walking on the foot as much as pain would allow as inflammation around the bone spur died down.

 The muscles supporting my spine are not doing a good job of stabilizing my vertebrae!

To say that I was hugely relieved not to have a serious injury that would require surgery was an understatement! I started PT again where we are working on strengthening the tiny muscles--the multifidi--that should be supporting the spine. Mine aren't, so my vertebrae are moving from side to side much more than they should, which irritates the nerves. The goal is also to eventually help me building up the strength and flexibility in my left leg, though it's possible down the road, if things don't improve, I might need to consult a neurologist. I've been standing on the foot and walking just a few steps here and there--like from my bed to the closet and other short distances--but have found that while I no longer have the terrible stabbing sensation, I can't move flex my ankle very much if I have weight on it. That means I still have to get around on crutches most of the time. If the problem continues, it's possible that it will be necessary to remove the bone spur or take some other more intensive action. In the meantime, because my arch has flattened, I have been wearing my Dansko shoes to help me stand properly. Otherwise, it puts a lot of foreign strain on my muscles. A month is a long time to be on crutches and it looks like I'll still have to rely on them for several more weeks, but it certainly is easier to get around if I don't have that heavy boot on and I can stand when I need to! I'm also extremely glad I won't have to wear the boot on my upcoming trip to Florida for a wedding because I have the cutest outfit and the bulky boot would have totally ruined the effect! I've had to cancel my lessons with Drifter indefinitely and have been unable to swim and have been severely limited in my ability to take photos, but what can you do? Swimming in the lake with Mr. Gorgeous was a perfectly reasonable undertaking. I've slipped around on lake- and river-bottom rocks many times without sustaining injury. It's an unfortunate twist in my ongoing disability saga and simply getting around the house sucks up a lot of my energy, but it's just what I have to live with.

When walking, because of the way
my hips, knees & feet are aligned,
my leg crosses in front of my body
So what does this foot injury have to do with my long history of issues with the bones, muscles, and nerves in my feet and legs? Well, quite a bit. I was born with short hamstrings, which I've learned can also be connected to an innate instability of the spine, which in turn can impact muscle strength and development. Whether I was born with inward turning knees or my muscle imbalances prevented my knees from assuming a normal, forward-facing position as I grew, I developed a funny gait, especially on my left side, to compensate for the tight muscles and abnormal leg position. An uneven gait can cause further back problems and I'm wondering now if life-long spinal instability and my leg issues may be the reason why I've always had poor balance. My poor balance made it very hard to snowboard, thus upping the chances of me taking a hard fall on my tailbone like I did when I was fifteen. Fifty-eight percent of sacroiliac joint injuries like mine stem from similar traumatic accidents, but my long-standing weakness and instability and stress on the muscles, joints, and nerves, especially on the left-hand side, made me predisposed to get such an injury. And it was the left-hand sacroiliac joint that suffered the damage and spent fourteen years in a rotated position. As I've said, that made one leg much shorter than the other, further impacting my gait, further destabilizing my spine, and in addition to putting pressure on my left-hand sciatic nerve, leading to increased stiffness and muscle atrophy, I'm wondering now if the back pain I used to also have higher in my back created pressure on the spinal cord and is why I have the world's flattest posterior. Obviously, from a genetic standpoint, it's not a place where my body stores much fat, but it intrigues me to think that pressure on the nerves might have contributed to the lack of development in my gluts over the years. It might also explain why in years past I put relatively little muscle on my legs for the amount of exercise--including weight-lifting--I was engaged in. And then it happens that when I do finally get my SI straightened out a couple of years ago, it comes at a time when I'm forced by the migraines to keep my physical activity to a minimum. That means even if my left leg is getting better information through the nerve and had more capacity to put on muscle, it didn't get the opportunity. And meanwhile the weakness of the little muscles stabilizing my spine remained unaddressed. That means I waded into the water with Mr. Gorgeous with a balance problem, a structurally weak foot that could easily move in ways that it shouldn't (thereby allowing the previously unproblematic bone spur to poke into places where it didn't belong), and a spine unable to keep its vertebrae in line (making it very easy for one to get tweaked in a way that put pressure on the nerves). I was set up for exactly this kind of injury to happen.

My legs as seen from behind
and reflected in a mirror--my left
leg is therefore the one on the right.
The size difference is very clear!
On the bright side, I'm glad to finally have some more insight into my long history of stiffness, pain, and injuries. Looking back at old photos, I'm rather amazed to see that the differences in the musculature of my legs was already visible by the time I was four. That means I've been getting poor nerve information in my left leg since I was a little kid! No wonder I've always had wimpy legs, skimpy gluts, back aches, and had trouble with roller skates, snowboards, and bicycles! It's a bit of a relief, really, to realize that innate structural issues causing irritation of the nerves are responsible for some of my physical ineptitude and not a lack of, say, effort or desire or moral fiber. This inconvenient injury means that I'll finally be able to address this left-side weakness that has been hampering my body since I was a toddler, which should ultimately result in stronger, more flexible, and more EVEN legs. I might get a better ability to balance out of the deal, too. Come next summer, if I dare to go wading in the lake (I may not!), it is possible that my body will have the proper tools to slip, slide, and then stand again unharmed.

*****
The injury update, two months out:

A week and a half after starting spine stabilizing exercises, I was able to start walking again without crutches. As communication between my nerves and my foot improved, the bones in my foot went back into their proper positions and the bone spur ceased to poke into where it didn't belong. My strength and flexibility has improved tremendously, my arch has almost completely reformed, and as of the last week or so, there is no longer any coldness in the foot at all. My sciatic pain has lessened considerably in the last few weeks as well. I still have the occasional issue if I walk on uneven ground, but the change from where I was a month ago to where I am now is almost miraculous! It underscores the importance of getting a good diagnosis and the right treatment. I'm glad I persisted in getting a second opinion and that in the end, some very simple muscle strengthening exercises were all the cure I needed!

Tuesday, August 21, 2012

So Bright You Gotta Wear Shades


One of the more debilitating aspects of my daily migraines is that my eyes are constantly sensitive to light. Even if I'm not currently experiencing pain, ordinary levels of light can hurt my eyes and may trigger a migraine. Light triggers can include lit lamps indoors, virtually any kind of store lighting, the reflection of overhead lights on polished floors, the sun coming in at low angles, the sun reflecting off of chrome surfaces (from faucets to car bumpers), the sun reflecting off of shiny surfaces (car windshields, any kind of water, etc.), pretty much sunlight in general, bright overcast skies, streetlights and headlights, any sort of light that blinks, computer and other electronics screens, TV shows or movies with flickering and flashing images or editing, and really just about everything else imaginable except my little 40-watt lamp in my bedroom. I take a variety of precautions to protect myself from light, from filtering blinds on the kitchen and study windows and a black-out blind in my bedroom, always keeping the contrast on my computer monitor turned all the way down, a anti-glare film on the computer monitor, sitting so I face away from lamps and windows whenever possible, avoiding going into stores or out of the house at night, and being selective about what I watch, but really, if I'm ever going to leave my bedroom, I have to be wearing some kind of shades. 


When I first got the migraines, I had two pairs of sunglasses: the cheap, oversized fashion frames I'm wearing in the photo on the left and a pair of more expensive polarized lenses that I'm wearing WITH a pair of reading glasses on the right. While the polarized lenses, purchased when I first started having migraines when I was in college, were better sunglasses, they didn't offer the same eyebrows-to-cheekbones coverage as the oversized pair. I found the contrast between the dark lenses and the surrounding bright light very painful, so I almost exclusively wore the larger pair.

In the spring of 2010, I went in for a standard eye exam and told my optometrist all about the onset of the chronic migraines six months earlier. My vision is very good (20/10 for distance, in fact) and my near vision, while no longer perfect, has not eroded to the point where reading glasses are usually prescribed, but the doctor suggested that I get a pair of glasses with a very mild prescription, just enough to give my eyes a break so they wouldn't have to strain at all. There was the tradeoff of not being able to wear my sunglasses while wearing the reading glasses, but for working on the computer and reading, the prescription lenses definitely made a positive difference.

My mother, who is always researching more ideas on living with chronic migraines and how to make me more comfortable, read about the possible benefits of red lenses for migraine sufferers in a book that mentioned, almost in passing, that a Japanese study had found them therapeutic. So off I went to the mall to inquire at the various glasses stores to see if they knew where I could find red lenses and was very pleased to discover that at the store where my parents got their glasses, the salesman said, when asked about red lenses, "Oh, like for migraines?" It turns out he had another customer that had been ordering red lenses for years and he knew just the place to get them. So that's how I ended up with my ic! berlin "garri k." frames with "currant" colored lenses. They were very expensive (though I did get to apply my insurance's eyeglasses allowance toward them because they were for therapeutic purposes), but amazingly comfortable! The super lightweight frames weigh just 20 grams, oh-so-gently grip the head instead of wrapping around the ears to stay on, and the wraparound lenses cover all areas of my vision with no gaps. Unlike any other frame I've worn, they've never once felt uncomfortable or caused a headache because of the way they fit or their weight on my head. And I loved the red lenses! They were extremely helpful for combating 
light sensitivity and I instantly stopped wearing my reading glasses except for by the light of the 40-watt bulb in my bedside lamp because the light-sensitivity reduction trumped the benefits of the prescription. I was finally able to look at the computer screen for more than fifteen minutes at a time and was less likely to get an instant migraine if I accidentally caught the glaring reflection of sunlight off the kitchen faucet. I also liked that they looked cool: I got compliments on them all the time! They didn't look like a therapeutic lens and the tint was light enough that I could wear them indoors. While they did distort colors somewhat, I quickly adapted to the way the world looked, though I would look over them when editing photos to make sure I got the color right!

At the same time that I got my red glasses, I also bought a pair of polarized lenses in an oversized frame for wearing outside. Smoky gray in color with a anti-reflective coating on the back (to eliminate those nasty something-bright-behind-you-reflected-on-the-inside-of-your-lenses surprises), I wore these any time I rode in the car or went outside for more than a few minutes. Between the red lenses and these sunglasses, I was better able to cope with the bright and shiny world. Unfortunately, after last summer's head injury, my light sensitivity increased. My sensitivity to light WITH the glasses became comparable to what my light sensitivity had been like WITHOUT the glasses prior to the concussion. Still, it was much better to have the glasses than not!

In the fall of 2011, I saw a vision therapy specialist my mother has worked with on scientific studies. She uncovered all kinds of interesting information, such as the fact that while my vision is more acute than the average person's, my ability to change the depth of my focus is extremely clunky. (From time to time, especially if my eyes are tired, my eyes will get "stuck" and not be able to refocus or, even more disconcerting, one eye will get stuck and the other will not.) I also have unusually active and acute peripheral vision, a much-smaller-than-average blind spot, and my eyes are constantly roving my environment. It validated my sense that I see more than most people (it's not just that I notice more, I actually SEE more). That means my sharp, roving eyes are having to refocus all the time. No wonder they get tired! She said that eventually she'll give me some therapeutic exercises to help me better ignore what's going on in my peripheral vision and focus more smoothly on what's in front of me, but we decided that the first thing we wanted to tackle was determining that the red lenses were the best tint. I'd been wanting to get a prescription pair of tinted lenses, but when she suggested that I might want to explore other tints, I jumped on board. She loaned me a spotlight and glass discs in various colors to place over the light in order to test them. The colors included red, purple, green, a couple of blues, gray, yellow, and amber. I discovered that purple made me really sick and that blues and green were problematic, too. The best out of the options was amber. I first tested this conclusion with a very orangey-amber pair of swim
goggles, but they kept fogging up. Then my mom found a $10 pair of amber-brown aviators and I wore those around for several months. They were indeed better than my red glasses and I found that I could wear them both inside the house and out, but they were quite uncomfortable to wear after a couple of hours, so I used my red glasses when I was on the computer. The amber lenses really distorted colors in a way I didn't like, but seeing life with distorted colors was better than wincing against the light of daily life. When I saw the eye doctor next, I reported my findings, but she had an even better idea: an optometrist up north had a sophisticated new type of lenses, so to get the very best tint, I ought to go see him.

It looks like a fairly standard sunglasses tint, but it's actually carefully formulated.

So earlier this summer, I got tested for the best lens tint offered by ChromaGen for my particular brain. ChromaGen lenses are most often used for those suffering from dyslexia. (There is also a different set of ChromaGen tints that correct color blindness.) In basic layman's terms, the tints, very specifically selected to correspond to certain wavelengths, slow down activity in the brain. Each eye is different, too, so some individuals benefit from having a different tinted lens for each eye. We found that one eye was very particular about the tint it preferred and the other eye liked both that tint and another, so I went with the same tint in both lenses. The setting sun came out of the clouds while I was there and so I was able to compare one of the hardest types of light for me to manage through my red glasses, the amber aviators, and then the selected ChromaGen tint. The ChromaGen tint was better than either of those lenses, so we decided to go with it. They were able to put the new lenses in my beloved ic! berlin frames, so I rather nervously surrendered them for the three weeks it would take to put the ChromaGen lenses in the frames. The ChromaGen testing and lenses were very expensive (and while it has been approved by the FDA, it is not yet covered by insurance), but I'm glad to report that my lenses are making a difference.

There was an adjustment period. Like a prescription lens, I had to work up to wearing them full time, especially while riding in the car. Since I've started wearing them full time, though, I think I've been better. They help a lot with bright lights, to the point where I can actually look at my computer monitor without recoiling in pain if the contrast is any higher than zero and the other night, while riding in the car after dark for the first time since I got them, I found I was able to tolerate the sight of the headlights of oncoming cars! This is huge, since in the past I had found being in the car at night was best dealt with by wearing my dark sunglasses, a sweatshirt with a large hood pulled low over my head, and keeping my eyes closed. (Not surprisingly, I avoided going out after dark whenever possible, but my weekly physical therapy appointment lets out after dark in the winter.) I also think I've just been a little bit better overall in a way that's hard to define, other than perhaps to say that my mind has been clearer more of the time. I also feel like it was easier for my eyes to recover after I spent several hours working in Photoshop recently. Also, they don't distort colors. I really like that! I did have to adjust to the fact that they are quite shiny on the back and an anti-reflective coating can't be applied without destroying the benefit of the tint and I still haven't gotten them adjusted to fit my face quite right, but as long as I don't have something really shiny directly behind me, I'm okay. And thanks to the tint, it's easier for me to face windows or lamps than it used to be! I still get migraines and my eyes still get tired and I'm still sensitive to light, but I would say that the glasses are making a difference. The next step will be to get a second pair of ChromaGen lenses with a prescription to use while I'm on the computer. I haven't decided if I should get them in my existing reading glasses frames or get new frames altogether.

The six pairs of lenses that have helped shield me from the light during 34 months of daily migraines.

My perpetual light sensitivity continues to be a daily and debilitating problem, but having good lenses makes many of the small comforts of my life--my digital photography, connecting with friends via the internet, watching shows when it's too difficult for me to read--possible. I highly recommend that sufferers of light sensitivity experiment with various tints (you can compare them easily enough with $10 sunglasses, like I did when I was testing out amber lenses) to see which works best for your eyes and then investing in a lightweight pair of frames with oversized, polarized lenses in the preferred tint. For those who have serious sensitivity issues, access to a trained practitioner, and an extra $1500 lying around, I do recommend the ChromaGen lenses. Oh, and always wear your shades like you're doing it because you're fabulous and it's part of your look, not because they're therapeutic!

And on that note, here's a song that frequently gets stuck in my head in the evenings...