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!!!

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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!

Three-Year Migraine Anniversary

It was three years ago today that I sat down to do some reading after wrapping up a busy week of projects for my graphic design classes and 35 hours of work at the flower shop and was overwhelmed by a massive let-down migraine. That headache set off a cycle of migraine sensitivity that has remained unbroken, banishing the future that had seemed so tangible in the previous weeks, one of happiness, independence, and creative challenges, and replacing it with a life of pain, seclusion, and dependence.

Bummer, as they say.

This year has not been without positive developments, such a gradual recovery from last summer's unlucky head injury, new dog-sitting clients, my growing involvement with horses, and my recent trip across the country. But it hasn't been an easy one, either. Our long, wet, gloomy spring made me feel too sick and dull to invest effort in my photo shop (or much of anything else, either) and led me to the tearful conclusion that I couldn't bear to spend another winter in Seattle. As the wet and gloomy weather continued into summer, I was discouraged by my lingering fatigue and cognitive dullness, which made living independently impossible. It looked like moving to a sunnier clime was out of the question, at least until my parents retired, something they don't intend to do for another eight years.

Once the sun came out in August, however, I made considerable gains, maintaining energy and good spirits despite my foot injury, and it was sunshine that helped me power through the rigors of my cross-country trip and its social demands. Seeing how much better I did when the sun was shining has reopened discussion on moving me to southern California in the near(ish) future. It seems senseless to keep me in Seattle, where rain is the norm and sunshine the exception (Seattle averages 226 cloudy days per year, and rain falls on 155 of them), when I might be able to function much better and with less pain somewhere else (Los Angeles averages 35 days per year with measurable precipitation).

The trip did catch up to me, it should be noted, and I spent five days in bed last week. The dry spell that extended into October has come to a wet and blustery end, and I find my life once again dictated by the state of the weather: my activity inside is determined by what is happening outside. Thus, when the wind blows and rain falls, you can find me slumped in my armchair, listlessly watching undemanding shows (I've been viewing a lot of "How It's Made") or retiring to bed with a book and the dog. When the weather is fine, my mental functioning is restored and at least for a few hours before fatigue sets in, I can take photographs, write blogs, make decisions, and draw enjoyment from my life despite its restrictions.

Things happen slowly for me, of course, and something so drastic as a move to another state will take time. I do, however, think that is where my future ultimately lies. We've decided that at the very least that my mom and I will take a trip to southern California (my parents grew up in the Los Angeles area and much of my extended family resides in Orange County; prior to the migraines, I spent a portion of my summer vacations there every year) in February, giving me something to look forward to as the days get shorter, darker, and wetter.

Maybe one day the migraines will stop. It's not out of the question. But it's also not to be expected; it's the kind of thing I can't hope for. I must live my life as it is and that means catering to every whim of my hypersensitive system. It gets me down from time to time; a few weeks back I spent several hours sobbing out some of my keenest feelings of loss. But having acknowledged that grief, I'm back to my day-to-day acceptance. I do what I can to treat and reduce the headaches--medication, acupuncture, physical therapy and massage, diet, special glasses, sensory interventions, trigger avoidance--and otherwise seek to fill my hours with photography and animals and other things that give me pleasure. I devote much more time to feeling grateful for what I have than bemoaning what I do not.

If you'd asked me, on October 19, 2009, prior to 5:00 in the evening, what I thought my life would look like three years later, this certainly isn't what I might have imagined. But then again, I've always had an almost superstitious aversion to predicting my own future, something that has spared me the pain of not having to compare where I am to where I had hoped to be. Also, I don't have time for regrets. I can't waste any of my energy on wishing things hadn't happened the way they did. My decision to start studying graphic design was a good one, even though the intense visual, creative, and intellectual involvement it required may have been a precipitating factor. And I absolutely refuse to wish that I was born with a different brain. Yeah, its inability to properly produce and process neurotransmitters the way most brains do has resulted in my bipolar II disorder, my sensory sensitivity disorder, and my chronic migraines, but it also has a lot to do with my intelligence and creativity, my wit and wisdom, my empathy and understanding, my writing ability and artist's eye, and my unique and invaluable way of looking at the world. On the days when the weather is fine, I still have access to all of that (though not to the part of my brain that handles creative writing; most writing I do for this blog is but a faint reflection of my talent at its fullest, and I do miss my ability to write at my best) and I would rather have migraines than sacrifice what is great about my brain. Also, changing my brain is not an option, even if I wished to. Thus, this migraine choir is mine whether I want to hear it or not, so I might as well spend my time on cultivating gratitude and pleasure. It's a highly rewarding way of spending one's time and I recommend it to everyone.

So, yeah, I have a disability. But it has forced me to live in the moment, which turns out to really be the best possible place to live. It has freed me from clocks and calendars, from the artificial stresses we place upon ourselves in our society to achieve things by a certain date or time in our lives. It has reinforced the value of simple pleasures. I have a roof over my head, good medical care, a family that loves me, a dog for company, internet access to the outside world, and deeply satisfying creative work. When the wind isn't blowing, I tend to feel lucky and I often feel happy. While I wouldn't wish my life on anyone, I get by okay.

Last year I chose, on this day, to write about what I've lost, and it's all still valid. But this year, despite being forced to spend most of last week in bed and being able to detect, yesterday evening, the falling of the barometer by my rising headache even before the storm hit, I'm feeling fairly positive. Perhaps it's because I see sunshine in my future.

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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!

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Concussed: One Year Later

The point that laid me low.

It's hard to believe it, but a full year has passed since I dropped a bag of beads on the stairs, painstakingly picked up all five hundred of them, and then jumped up from my kneeling position, smashing the crown of my head against the pointed corner of the handrail directly above me. Twelve months later, I have yet to fully heal from the resulting concussion.

An explanation as to why a minor concussion could have such a profound effect on my brain.

Abbey was a big help.

I've come a long way from those first awful weeks where I was confined to my parents' darkened bedroom, unable to tolerate any light, and so nauseated I could barely stand drinking tiny sips of water through a straw. The concussion caused migraines that felt like a roaring chainsaw was being pressed into my brain. My heart raced and I was badly overheated all the time. The slightest noise was agonizing. I was terribly fatigued, but had difficulty sleeping because of my heart rate and the pain. My nausea limited me to a diet that consisted mostly of fruit juice popsicles, a few peanuts for protein, dried apricots for potassium (otherwise I got nasty muscle spasms), and the occasional bland cracker, and my weight started to drop. My one comfort was the company of my loyal dog.

Five Weeks Out: Before and After

Stormy winter weather
caused fatigue and pain.

Eventually, I got well enough to sit up in bed and read, then to spend fifteen minutes at a time on the computer if I wore my darkest glasses. I gradually progressed to watching ocean documentaries because I was able to tolerate the blue underwater scenes. I had a hypomanic burst of energy in August that I used to open my second Etsy store, but most of the time, I found it difficult to think clearly and difficult to concentrate. I was exhausted all the time and had to spend most of my days in bed. My eyes were more light sensitive than they had been before and I suffered as the angle of the sunlight changed with the coming of winter. My migraines were more painful than they were before. I found I was more susceptible to changes in the weather, too.

Eight Weeks Out: Where I'm At

The effort it took for me to take
this photo proved costly.

As the weeks went by, I improved enough to get back to my photography work and watching TV shows on the internet and spending time with my family. I was able to be present, at least for the meal, at Thanksgiving and Christmas. Although they wore me out, I was able to take some dog-sitting gigs. But after three months, my recovery stalled at about 80%.

Three Months

Hanging out with horses
has been very helpful!

I celebrated my birthday a couple of weeks ago, which seemed very strange, since I could have sworn that I'd just HAD my birthday a few months before. In many ways, that was true. July through February had more-or-less vanished into a gulf of concussion recovery; life did not truly resume until eight months later, in March, when I started getting involved with horses. Since then, I've had more strength, energy, and stamina, I've been better able to drive again, and I'm much more likely to leave the house for fun or to ride along on errands and not just for medical appointments.

The beads that caused it all.

But if you compare where I was last year at this time to where I am this year, it's clear that my recovery is still not complete. Last year, I was wrapping up the prep-work for a children's ABC book. To get the necessary props to photograph, I went on many errands and was capable of making three different stops, including at visually chaotic places like thrift and party supply stores, before getting a migraine. I had built up enough strength to occasionally walk the dog. I was taking tons of photographs. My life was, by necessity, very small in scope, but I had sufficient energy to enjoy it and get quite a bit of work done, especially when the weather was nice.

My boxes of ABC props
have been put away.

This year? The ABC book has been shelved (quite literally, in the hall closet) indefinitely. I just can't see having the energy to take on a project of that size any time soon. While I have started driving to visit the horses, I'm most definitely not running multiple errands in an outing. I've taken myself to the dentist and the bank in recent months, but I avoid going in stores, which are just too loud and busy. I ride along on fewer errands with my family than I used to; too often the visual chaos of the outside world speeding by is too much for me. I've found there are movies that I used to be able to watch that I can no longer view because the quick and jagged editing style gives me a migraine after just a minute or two. Sometimes I'll go for a walk around the block with the dog, but any further than that and I risk getting a headache from too much exertion. I'm still more noise sensitive, especially to music, than I was before the concussion. It's really just in the last couple of months that I've been able to resume reading at the my pre-concussion level and sometimes my brain and my eyes are still too tired to handle small print and complex sentence structures. I spent so many days this winter incapacitated by the weather that I actually brought up the possibility of moving to California. It's depressing to spend so much time feeling wiped out and unable to think clearly, but I don't think I'm well enough to live on my own, whereas before the head injury, if I set things up properly, it might have been possible. I also have this ongoing sense of nearly always being stretched too thin, trying to do too much. I feel like I have no reserve whatsoever. I'm very driven by my creativity and my general inclination toward hard work, so it's not easy to scale back to the minimal level of activity my brain demands. I still take lots of photographs, but I've slowed the expansion of my photography as a business. Also, before the concussion, I used to make an Etsy treasury every single week. I seldom have the ability to look at the computer screen for the amount of time it takes to make one (and if I am having a day where I'm able to look at the screen for extended periods, I'm probably busy doing something more immediately relevant to making Etsy listings, like editing photos in Photoshop), so I've created only a dozen or so in the last year. I've also noticed that I watch far fewer movies than I used to; they sometimes seem just too long and demanding. I've been saying for several months now that when the weather finally gets nice, I'll know for sure how far my concussion recovery has come because a) I always do better when the sun is out and b) it had been very sunny prior to my head injury, but I know that even with the sun shining, I'm not up for making extensive alphabet lists and driving from store to store in search of props like I was before.

Photographing things like shrew-
moles keeps my spirits up!

I'd say that I hover around 90-95% of a full recovery one year later. It's a real shame that this happened to me, since the last thing my inflamed migraine brain needed was more inflammation and nerve damage, but what can you do? As I discussed in this post, none of the decisions I made that led to me to get this concussion were decisions I would want to take back. It was simply really bad luck, an accident. Life is full of accidents. I can't take this concussion and its lingering impact away. Sure, it would be lovely to be doing better than I am, but I'll be damned if I waste any of my precious energy on useless regrets. So I do what I always do: take photos, pet the dog, read when I can, watch nature documentaries when I can't, write blogs and listings when I'm able, crochet baby blankets when I'm not, spend time with my family, spend time with the horses. In time, my brain may heal completely. Or maybe it won't. Either way, I'll just keep doing as much as I can with the amount of energy and wellness I've been granted for the day, which, when you get down to it, is as much as any of us can do and a reasonable recipe for satisfaction.

My Migraines: A Visual Handbook

One interesting characteristic of my migraines is that I can categorize them in terms of colored light. Migraines lower than a 5 out of 10 on my personal pain scale generally do not have a colors, but once the pain starts to climb, the migraines shift from best being described verbally to a pain that I understand as a visual experience. This is not to say that I literally see colored lights (blinking blue aura lights are a different matter entirely) or the visual distortions experienced by some migraine sufferers, but it's how I see the pain in my mind. This made it very hard to explain my migraine pain to doctors during my first couple years as a migraineur because it seemed silly, when asked to describe my headaches, to say that they felt like columns of green light, but it really was the best possible description and I have since read that seeing migraines this way is not unheard of. Just as the nature of my migraines have changed over time, I have found that my migraine colors have changed, too. I do not get green lights migraines anymore, but for my first year and of half as a migraine sufferer, it was green lights and nothing else. 

Those early migraines were monsters. They always lasted for three days and the pain was immense, averaging an 8 out of 10 on my personal pain scale. Once during this period I had a migraine so severe that I actually accepted death and gave myself permission to pass on if I needed to; it seemed impossible that you could be in so much pain and not die. I was horribly light sensitive, noise sensitive, and nauseated during those three days and so I would lie in bed as time melted away and watch my green lights for hours.

A green lights migraine.

What I saw was a theater of sorts for my headache: the dark stage represented my skull and the backdrop was a velvety blackness of unknown depth. As I watched, columns of green light would swell forth from my skull, slowly rising and falling, blooming and fading. I had the sense that the interior of my skull was bursting with utterly sickening and blindingly bright green light, but all that I saw of it were these shafts of light that pierced the surface. It's difficult to precisely convey the brilliance and terrible luminosity of this green light; to reach for another metaphor, it was like watching an aurora borealis of pain. I also had the sense that a low, roiling, icy fog of pain constantly blew through this landscape of green columns, a pain that was different from the pain of the lights, a pain so cold that it cut my brain like a razor blade. I must have occasionally eaten a little during those three-day migraines, and surely slept, and sometimes daylight must have seeped into my room, but all I remember is watching this endless light show: the bloom

and fade of the columns as they rose and fell, the sickening pain of the blowing fog as it passed through the illuminating shafts of light, the blackness against which the the lights put on their show, and the total silence of the dead, black air in that space. It was beautiful, this pain, green and translucent and haunting and complete, and when the lights faded at last after three days, I would have a sense of emerging from the underworld.

The first time I had a migraine without the green lights, I initially insisted that it wasn't one. When asked at the ER if I would characterize it as the worst headache I'd ever had (for those who've never had a migraine, this is a standard diagnostic question; if you answer "yes," there's an excellent chance that you're suffering from a migraine), I explained that I'd had migraines before, but this headache was totally different. It had no colors and it burned right on the surface of the scalp. It was my first "transformed" migraine, too: it lasted for fourteen days before finally succumbing to a regimen of anti-inflammatory injections given every six hours for two days. While I would have many more migraines, lasting for longer and longer periods of time, I would not experience a migraine in terms of color again until the onset of chronic migraines two years ago.

A blue lights migraine with beams, cracks, blotches, and patches.

These days, when I have a migraine severe enough to shift into colors mode, the light is almost always blue. Think, perhaps, of the blue flames emitted by a gas burner when imagining the color and translucency, though a blue migraine is not a burning one. The shafts of light are much smaller than those of a green lights migraine, more beams than columns, and more irregularly scattered across the stage that is my skull, and tend to rise and fall less dramatically. Sometimes these beams of blue light are located along glowing fault lines of blue, but sometimes a crack emitting blue light will appear without any shafts of light emanating from it. Patches and blotches of luminous blue pain that seem to hover just above the surface of my skull may also appear with or without the presence of blue beams. In the parlance of my migraines, a blotch is a area of pain generally not much larger than a quarter and sometimes much smaller, while patches can be as large as the palm of my hand. Blue beams only appear out of the top of my head, while patches are generally located only on the back and sides. A really bad blue lights migraine may morph into a twin mohawks migraine, where either spikes or hundreds of painful pinpoint beams will shoot out in parallel lines running across the top and partway down the back of my head. The pain of a blue lights migraine is similar to that of a green lights migraine, but, like the shafts of light themselves, somehow thinner.

A blue twin mohawks migraine.

I also get red lights migraines, which are different from blue light migraines because the pain stays close to the head and is more of a burn than an ethereal agony. Most often a red lights migraine (which, to be specific, is an orangish-red rather than a true red) closely resembles the element from a toaster: a red-hot crinkly wire that casts a reddish-orange glow of pain around it. Red lights migraines can also form large smoldering patches.

A red lights migraine "element" and patch.

Just as a blue lights migraine has a worst form, the twin mohawks, a red lights migraine can transform into a dreaded brain-in-flames migraine. This is a migraine where the burning sensation covers the entire surface of the scalp and has reached an intensity that makes it feel like a match has been touched to the highly flammable lining of the brain. Rather than a bright blaze, a brain-in-flames migraine is a low, hot fire, nearly translucent, with a blue base to the small orange flames that never rise more than an inch or two above the head. Virtually the only way to get rid of a brain-in-flames migraine is to sleep it off, though sleep can be hard to come by when one's brain is on fire.

A brain-in-flames migraine.

Patches occur in both red and blue migraines, though the sensations are quite different. A "horns" migraine can be composed of either red or blue light and has a similar sensation in both colors. In short, it feels like an evil, painful pair of devil horns has sprouted from the temples. A horns migraine is a very bad one, not quite as bad as a twin mohawks migraine, but blue horns are sometimes the precursor to those terrible spikes and dreadful enough even if it doesn't make that final transformation.

A red horns migraine.

All of the migraines I have so far described are translucent, thin, glowing, and emanate outward from the head or, in the case of patches and elements, hover just above the scalp. While there is the occasional "verbal-only" migraine that can be described as a paper cut on the surface of the brain (other "verbal-only" migraines, or migraines without color, include the somewhat inward oriented "tightening scalp" and "collapsing eye" type pains), all of the rest of the migraines project outward at various speeds, distances, and intensities. It was not until I had my head injury this summer that I encountered a new sort of migraine: a thick, opaque, yellow-orange headache of a decidedly inward orientation.

A thick, opaque, yellow-orange migraine.

A yellow-orange migraine appears to me as a fat scribble on the brain, as if someone took a blunt oil pastel (which is thicker and greasier than a crayon) and made a vicious doodle. Because of the association between this migraine and the head injury, it is located as shown in the illustration above, starting roughly at the hairline above the right eye and extending more or less along a line that passes over the injury site, which was on the right side of the crown of my head about as far back as my ear. While the thick, opaque, yellow-orange scribble itself does not seem to penetrate the brain, it is accompanied by the sensation of having one's head smashed in by a baseball bat or large, blunt ax or of the brain being violently attacked by chain or circular saw. While the luminous light migraines have an otherworldly sort of awfulness, I find this opaque migraine more disturbing. It may just be because it is associated with the extreme nausea, light sensitivity, noise sensitivity, and fatigue that went with the concussion or that I'm so used to having translucent migraines, but when I had an opaque, thick, yellow-orange migraine last week for the first time since those weeks following the head injury, there was something very nasty and just wrong about it. I work hard to prevent my headaches from escalating to the twin mohawks or brain-in-flames point, but I'd prefer to have either of those over a yellow-orange migraine!

And that, in short, is the lexicon of my "visual" migraines: green lights, blue lights, red lights, and opaque yellow-orange scrawls. I hope that this illustrated guide is illuminating for those who have never had a migraine or who suffer from a different kind of migraine, offering a glimpse into the world of colored pain that lurks inside my head.