The Zebra and Dr. Google

This is Ehlers-Danlos Syndrome Awareness month and since I have Ehlers-Danlos Syndrome (EDS) I thought I should write a post about it.

Several physicians have said to me, "When you hear hoofbeats, think horses, not zebras." They are taught this dictum in med school, and it means that when a patient comes in with a complaint you first think of the common causes for their symptoms; a cold for a sore throat, an allergy for hives, arthritis for bone pain etc. rather than the exotic, like yellow fever, or beri-beri.

The problem is, I'm not a horse. I'm a zebra. I am to quote many a physician, "Complicated." Having one "rare" disorder is enough to discourage many physicians from taking any interest in you, but I have three, laid over a background of childhood polio. Much to your relief we are not here to discuss any but the last one I had diagnosed.

It's also the one which gives me the most trouble right now. EDS is caused by a genetic mutation leading to either a lack of collagen production, or defective collagen. Collagen is a group of proteins found in the muscles and connective tissues, and the main component of tissues that support, connect, or separate different organs of the body. It is found in tendons, ligaments and skin, and is also abundant in the cornea (eyes), cartilage (ends of bones), the bones, blood vessels, the gut, and the discs between the vertabrae.

Collagen underlies the:
• Storage of energy
• Protection of organs
• Structural framework for the body
• Connection of body tissues
• Connection of tendons, bone etc. to muscles

 It's clear from even this short description that being collagen deficient is not a particularly good idea. It's rather like being forty sandbags short of a dike when the water rises around your house in a flood. The water doesn't look at the 2000 sandbags you filled and piled so carefully, it simply finds the weak spot and suddenly your grand piano is floating in three feet of muddy water.

When EDS patients talk it's often of how to cope with the unending and severe pain they suffer. The muscles and the fascia that hold them together are fragile, and sustain many small rips or tears during even normal daily activity. This means constant deep muscle pain for many patients.

But pain is also the result of being "bendy", or in medical lingo "hypermobile". Joints move too far, they jump the rails and either partially or completely dislocate with little or no provocation. Turning over in bed, or pulling on a T-shirt can dislocate shoulders, a sneeze can subluxate (partially dislocate) ribs.

 I have always been extremely hypermobile. On the Beighton scale I score 8 of 9, even at an age where a 3 will get you diagnosed. I can place my palms together behind my back in what is called "the backwards prayer" pose. I can turn my feet entirely around so my toes face backward. I can bend my thumbs down to touch my forearms, and all my fingers will bend backwards to a 90 degree angle to my hand.

 But this slippery joint business also means one of my neck vertebrae slides forward just enough to entrap the nerve to the right side of my face, so it feels like I have a nail in my eye and a toothache in every tooth on that side of my head. My right hip slides too far sideways with each step, and my crooked spine has trapped my sciatic nerve so that if I walk too far, or climb steps, I get lightening bolts of pain from lower back, down through my abdomen, hip, knee to my foot. Picking up bags of groceries, or vacuuming, subluxates my shoulder and neck and I'll have a migraine for two or three days afterwards.

Another EDS marker is thin, transparent or extensible skin. My veins are easily visible through my skin, and blood draws are a nightmare because my veins are so fragile they rupture, collapse, or lack the surface tension needed to allow the needle to penetrate. Blood vessels are prone to rupture, vascular tumours are common, surgical sutures tear through, and scars widen and assume a thin "tissue-paper-like" appearance.

 However, I'm lucky, as I have a relatively mild case. Many are far worse off than I am. I know of children who are wheelchair bound at eight or ten because they are too loosely-jointed to walk. There is no treatment, other than supportive bracing and pain control, which many doctors, including my own, are reluctant to prescribe in adequate amounts. So you eke out the pain meds carefully, trying to get by without them whenever possible. And the pain becomes just one more thing to contend with.

You can't tell an EDS patient by appearance. Patients look perfectly healthy. So many, like me, slip through the diagnostic net for years, even though I showed dozens of doctors how hypermobile I am. I had vascular tumors and blood vessel ruptures and difficulty with scarring, and though the diagnosis was suggested by a young resident during rounds after I had an arterial rupture in 1975, it was rejected as "too rare".

I was only diagnosed three years ago, when I was 64, by an absolutely wonderful woman GP, who noticed my odd scars and hypermobility on her own. The diagnosis was confirmed by a geneticist just recently. Thank the Cosmos for the web where as "zebras" those with rare disorders can congregate and graze slowly across the virtual plains, talking to each other, finding comfort and safety in a herd that is not made up of horses. And for a place where we can write and educate patients and doctors who may know little (or nothing) about EDS, and may not recognize the symptoms for what they are.  And thankfully as someone joked the other day, physicians now often leave the exam room to consult "Dr. Google", who keeps the world's largest repository of medical knowledge.  Gotta love the innerwebs, the "zebras" best friend.

Predictable as Sunrise…

Yesterday, as reported, I planted six Osteospermum plants, which meant digging six small holes about four inches deep in soil which had been thoroughly dug on Monday last. I sprinkled a bit of time-release fertilizer granules in the bottom and plopped them in. My friend and neighbour Gail came along and planted the larger false spirea.

When I finished in the garden I brought the hand truck with the bin of garden implements, left it sitting in the middle of the kitchen floor and sort of collapsed into my chair. I even had an unexpected two hour nap on the sofa in late afternoon. 

Today I am climbing Mount Aconcagua, (aka "my dirty house"). I decided to call it Aconcagua because Aconcagua is the highest mountain in the Americas and since it is in Argentina it's appropriate since my house-keeping has definitely gone south. Unfortunately I had a very busy week for me, and I can barely move today. I start to sweat after 10 minutes on my feet. This climbing business is not for the faint of heart.

Wikipedia has thoughtfully provided me a to-do list for the day. Beginning with "Nido de Condores", which I think was a warning that if I didn't quicken my pace the condors (who are the world's largest vultures) were apt to mistake me for dead and tie on their bibs, the order of tasks is outlined. 

At "Nido de Condores" I cleaned out the cat box. (Maybe it's the stink that attracts them - "them" being the condors). The floor is absolutely awash in cat litter. Not just the floor in front of their box, or in the laundry alcove where the box lives, but the entire house. That little stripey bastard of a kitten rolls in the litter and carries it all over the house on his fur. He seems to think this is a big joke.

Moving up the side of the mountain, you can see my path was staggered. I veered like a drunken monkey, until at "Berlin" I hit the wall and had to sit for a few minutes. But the drier stopped and I had to shake out, fold or hang those clothes or else my days as a fashion maven will be over. This task is complicated somewhat because the stripey one thinks jumping in and out of the laundry hamper while you sort the socks, towels and undies is a cool thing to do, preferably when he's just rolled in the litter! (He's fortunate that he's so cute, and he knows how to smooch good.)

Looking farther up the mountain and measuring my progress. At "Independencia", the kitchen floor was finally independent of the bin and hand truck full with its cargo of hose, muddy shovel, fertilizer, and other gardening implements, and the counter and stove top became independent of dirty dishes and mysterious crusty bits.

While I was outside returning the gardening implements to their proper spot I stopped a moment and looked over the side of the balcony at our Japanese plum tree, which is just beginning to bloom. In a few days it will be covered so thickly in blossoms you won't be able to see the leaves.    

The mountain's final summit lies far ahead and will take a good deal of perseverance to achieve.  There are tufts of silver grey fur everywhere, along with a uniform layer of litter and a goodly amount of dust. In other words, I have to vacuum, but first I have to sit.  Vacuuming is the last 300 foot high cliff before I summit. But I have to move along, those condors are circling and they have a hungry gleam in their eye.

I Knew This Day Would Come

Eventually.

Winter never lasts forever in Calgary, it just seems so to those of us who may count the days between the first August frost and the … oh, if I say it I'll jinx the whole thing. I've seen it snow and freeze 10 days straight in JULY, so I'm grateful we are now experiencing summer. We went from snow and -15 C (5 f) to 24 C (75 F) in a couple of days. Skipped spring entirely. The apple and plum trees went from entirely dormant to bursting with clouds of pink and white blossoms in three days time.

Cinnamon Fern

The irrigation crew showed up Monday, dug a new bed and and put in three new sprinkler heads to create a "boggy" area for the cinnamon ferns I bought the week before. With any luck these will reach at least 3/4s of the their reputed size of 48" tall and 48" wide. We need something big in that space.

The crew will be back in a few days to put three new sprinkler heads in the front flower bed. That bed is blazing hot and there was not a single functioning sprinkler head in it last summer. Most of the perennials I planted there last spring died of thirst, despite me hauling 100 pounds of hose down there to water every few days.

After the crew left I planted the fern rhizomes (four of them) and (picture me doing my best skippy step) yesterday I added a bit of garden shopping to my list at the Wally World.

First thing off I bought one of these new fangled light-weight hoses. It only weighs about a pound but is coiled like an old-style telephone cord. It's 50 ft long but you're lucky to wrestle 30 feet of hose out of it. I will have to buy a second one to attach to the first one or wrestle with the hose all summer. It also has about 1/2" bore so watering is going to be a leisurely affair. That's fine by me, nothing more relaxing than standing out in the evening watering the garden. Very Zen.

Second thing I bought was some more decorative plastic fencing to put along the walk where I planted the cinnamon ferns, and I bought a half dozen purple Osteospermums, a member of the daisy family, all cheeky Charlie, to plant in front of the ferns, which you can't see, as they are not yet up. These plants don't get very tall, maybe 10-12", but will add some colour at the edge of the bed while we wait for the ferns to wake up.

This is an eight foot extension to the existing flower bed, one which takes the bed right to the concrete pad of the entrance. While most dog owners in the building are considerate, a few simply bring their dog to this spot, right outside the front door, and allow them to use it as their bathroom. Filling it with plants and fencing it should send a strong message that they need to move out to the designated area.

I also added a false spirea in the dappled shade below a Japanese plum, where it is paired with hostas, a lady fern and  bergenia (Elephant ears)  which came through the winter in fine form and hopefully will grace us with its lovely spike of pink flowers soon.

Gardening season has begun. In the next few days there will be a plant-buying-in- earnest trip. Kevin, the owner of our landscaping company, is coming to trim shrubs, weed, add compost, dig out some shrubs which aren't doing well where they are, and plant all the lovely things I will be buying. And the congregation said, "Amen."

Rocks in my Head

I've found in my 60s a freedom and acceptance of myself I never had when I was young and constantly heard my mother's litany of shame in my head. My mother equated affection with promiscuity and physical touch with shame, even between mother and child. Little surprise I grew up conflicted, my whole being longing for affection and affirmation, while I huddled on a ledge of fear, looking out at a world that I'd been told didn't want me.

Times have changed and we understand that companionship and touch are as necessary to physical and emotional health as are food and shelter. And at my age I can now hug freely, speak warmly, be affectionately encouraging to others without any of these gestures being interpreted as sexual in nature. More importantly I've realized my mother was a cracked vessel, and I have allowed her to own her version of me as ugly and unlovable. I have kicked it to the curb because it never reflected reality. I like myself a lot better now, though I still have a few rocks labeled "rejection" in my backpack (i.e. head). Ever so often I stop, take one out and throw it off the mountainside, and pray it doesn't hit any climbers down below. 

Since I'm learning to like myself better I find others like me better too. People come to my door in a near-constant stream, for a hug, a chat, and for no reason at all. People make up reasons to knock on my door. Although I may groan as I haul myself out of my chair, no one goes away without a hug or a word of appreciation, because I know what it's like to be deprived of those things, and to be hungry for them.  

One of the women in our building has Asperger Syndrome. She is avoided by many in the building because once you are her "friend" she's attached to you at the breastbone. This annoyed me to begin with, but then I thought about it. She is desperately lonely. I knew that feeling as a child. I know how it feels to be unwanted, how it feels when no one wants you to join the game or the conversation, sit at their table, or beside them on the bus home.

So I decided I can give her what I have to give, acceptance and normal  friendship. This decision made me feel vulnerable and shaky inside, because I wasn't sure I was up to the task. I had to set boundaries, so she doesn't call me at 6:00 every morning, and every 30 minutes during the day, or isn't camped out in my living room 10 hours on a Saturday, but it's working out fine.

It's good.  She's happier, and I'm happier because I always feel badly if I've hurt someone's feelings. But I couldn't have done it when I was younger.  Too many big rocks on the path. Too painful to climb over them.  What I did before was just let someone take advantage of me (purposefully or just because they were being themselves) until I grew so angry and exhausted that I snapped and completely cut off any communication with them. I felt terrible guilty about it, but I didn't know how else to handle it at the time.

Now I'm thinking that those 20 somethings, with their flat bellies and smooth skin, haven't got a march on this old Mama, looking back at the route she's climbed. I wouldn't exchange my life right now for a million dollars and a chance to live the years between 20-60 again.  It's not only love that's wasted on the young, it's contentment. 


 

So close we can't see it?

How do you handle the boring, mundane, potentially frustrating every day tasks of your life. Have you thought of this?

The Wreck of the Hesperus

  
'Tis the day after BBQ the Magnificent (stop your scoffing, for me it was a triumph!).

Because I conserved my energy to spend on said social gathering my floors went unswept yesterday. Today there are the usual two-days'-post-swept drifts of cat hair and dust silently mocking me everywhere I turn, and I am too done in to sweep.

Upstairs the neighbour is vigorously vacuuming her carpets. I praise the great gods of surfaces that I do not have carpet. At our time of life there is an existential crisis around carpeting. Do you or don't you?

Carpeting cushions falls, and in some cases prevents them, as it absorbs slippery liquids slopped on it by cats, and tea in cups held at a 45 degree angle to the floor by a distracted (yet delightful) husband. On the other hand it absorbs liquids like cat puke and the occasional… well, let's move on by just saying surface dirt is not all one worries about with carpeting.

Hard flooring is just that, hard when you trip, slip, slide, wobble or flop onto it. There is nowt between you and gravity when the floor is maple laminate. It's just you and your old brittle bones and easily aggravated capillaries. Where was I? Good Lord I wander like an ant who has discovered a picnic.    

Salvador Too, the "innocent baby cat"

Anyway, the floors are adrift in filth and the wretched baby cat, who considers himself abandoned when the bedroom door is closed at bedtime, had a lovely time overnight. I don't know how he manages to look so innocent.

I had a large bin of bits and bobs from the BBQ which I put on the table. Grocery bags, plastic bags, paper plates, paper napkins (we call them serviettes in Canada land), and many small bits. He "helped" me by unpacking everything, throwing it on the floor and then carrying or scooching items into every accessible corner. Under furniture, into the litter box, all over the floor, every room.  It looks like the city dump in here.

My mother had a phrase for this, "This place looks like the wreck of the Hesperus!" It seems the generation schooled at the turn of the 20th century was far more conversant with classical literature than we were. Those of us born in the 40s were a moanful bunch, complaining bitterly about being forced to read Beowulf, The Canterbury Tales and The Rime of the Ancient Mariner, but at 60 my mother could still recite them from memory, a  feat I doubt any seventh grader could do now. On the other hand she could never believe man had actually gone to the moon. That was as impossible for her to comprehend as committing "The Wreck of the Hesperus" to memory was for me.

So I look out over my particular wreck, and do my little share of moaning and remember my mother's deep and long influence on my life. She was tiny, but all dynamite and determination. If I know her, she's probably scrubbing her side of the golden street in front of her mansion in Heaven right about now. I can't for a minute believe there are no clocks in the New Jerusalem because otherwise how could my mother know when it was appropriate to cluck her tongue at any neighbour who hasn't scrubbed her steps by 6:00 am? 

Wherever you are Mom, Happy Mother's Day. I've given you the gift of a house that looks like The Wreck of the Hesperus, so you can spend your day "mothering" me in the old familiar way.  I appreciate you a lot more at 67 than I did at 17, but my idea of Heaven still isn't scrubbing steps, so when I arrive (assuming I do!) we may live in different neighbourhoods of the New Jerusalem. I'll visit you though, and you can visit me, as long as you don't quote Longfellow. 

I Am Certifiable But I Have Fun!

It's spring clean-up and maintenance time for the condo building, which means sweeping the gravel from the parking lots and parkade, cleaning the carpets in all the common areas, having the outside of the building pressure washed and the windows cleaned, cleaning the dryer vents, having the sewer drains cleaned, repairing concrete and asphalt weathering, on and on and on.

This all involves a lot of inconvenience for residents, who must find alternate parking for several days, haul all their patio and/or balcony furniture and flower pots inside and back out again, and put up with no water, and not being able to even pour water down a sink or flush a toilet on the day the drains are cleaned.

So yours truly, (aka "She who will never learn") proposed at the last meeting of the condo board that we throw a BBQ for the residents mid-May, as all this cleaning got underway, to ease the inevitable grumbling. Everyone was enthusiastic. What I did not realize is that when I said, "The Condo Board…." the rest of the board heard… "*I* (meaning me individually, alone) will throw a BBQ for…."

Now this is not exactly true. I had plenty of help. Two other board members bought the food. One brought the big table with folding legs from his work. He also bought and brought the propane tank. Another brought the BBQ grill from her patio across the parking lot to the lawn where we were encamping before she took off for the weekend.

In the end only one other board member was here (of seven) to help me haul the food, the table, the cooler, and all the necessary tools out to the front lawn, where we set up in the shade and cooked the food. Even so it went just fine. We had burgers, hot dogs, both white and whole wheat wheat buns, three flavours of chips, condiments, cold drinks and popsicles, which is a pretty reasonable menu for a  Saturday afternoon BBQ.

The weather couldn't have been better. It was 27 C (80.6 F) with a light breeze. Perfect! 

When we sent out invitations we asked our residents to drop a note in the suggestion box to let if they were attending, and some did, but as expected, half the ones who said they were coming didn't, and many who didn't say they were did! In the end we had 48 attending, which was a great turnout! And even better, about 3/4ths of them came early, and sat to visit with their neighbours until the very end. People who had passed each other in the hall for ages finally learned each others' names and had pleasant conversations. I was especially thrilled that several of our residents who rarely interact with anyone came out and not only had lunch but talked with some other residents.

At the same time we had a "Swap Meet", where we said, "Bring anything that's still useful, good, clean that you want to move along to a new home and we'll play swap. If you see something you like, you may take it for free!"

So, most residents arrived with a box, bag or bin full of items to pass along. This was as much fun as a visit from Santa Claus, especially as one of our ladies draped the clothing over the limbs of the pine trees and gave fancy sales pitches for each one, resulting in a bit of an impromptu fashion show with some models not usually seen on Parisian catwalks.

I moved along a number of items (as described in a previous post) and came home with a couple of beautiful picture frames and a great storage piece for the bathroom. The items which were left at the end were boxed up to be delivered to the Sally Ann. 

So, dear Interweb friends, I had a bang-up afternoon and am completely knackered but am totally happy.

At Last!

Although this was taken a few days ago, 
I'm just getting around to sharing it now. 
From the flower bed out front.

The View From a Ledge

Things are looking up, but that's not what you're supposed to say when you are standing on a ledge. I can't say things are looking down, but when I survey Mount Clutter from this particular ledge the view is beginning to look less like the Alps and more like the less imposing but still rugged crags of Wales.

I am more than thrilled to report that except for one lone box which shall shortly be moved to a closet shelf which has been cleared the ugly mugster of a storage unit in our bedroom is empty of all save dust. It is headed for the bin!

Hooray me even though I am a bit cross-eyed with the effort and I think I have subluxated a rib or two (something which happens frequently), and my back and neck are out of place. But the satisfaction of achievement is overriding the pain, for the moment. It won't when I lie down and try to sleep tonight, but right now - fist pumps are in order!

The front hall closet is no longer a black abyss of vacuum cleaner hoses and old broom handles, seven more coats than any two people could ever need, and a dozen boxes saved in case we had to return a product. I will head for our closets next. My husband will wear a shirt that shows six inches of belly and fits like a second skin (not necessarily an attractive look at our time of life) so I'm purging those and the ones with permanent gravy stains. On my side I have several shirts which will go.

I made the heart-wrenching decision to give away my gorgeous Pashmina shawl, as all I ever do is stroke it and drool on it. Wearing it makes me feel a fraud. Elegance is just not part of my look. God knows I'd love to be elegant-looking, but I am far better suited to a pair of pull-on jeans and a T-shirt than a Pashmina shawl and hoop earrings. [edit: In the end I chickened out and pulled the shawl out of the give away bag and hung it back in the closet. A girl needs aspirations after all!] 

I've still got drawers to go through and those under the bed plastic storage bins. I have one full of fabric when I know I will probably never sew another stitch in my life. I'll keep a bit of that stuff, in case I get the urge to quilt again, but most of it is going.

For today I'm done. The litany, "keep it, give away, throw it away" is flying around and around in my head like a hornet you can't get rid of. But I've encamped on this ledge and will hunker down with my heating pad and perhaps even doze a bit. Tomorrow's another day, and there's still more mountain to cover.   

Climbing Mt. Clutter

Here it is is, looming up ahead. Endless. I know damn well when I crest that ridge before me, there's going to be another one lying another thousand feet further ahead, just as steep, just as rocky. I'm not enthusiastic about this climbing business.

 See the rocks? Each one is something I need and want, or no longer need, or something I want but do not need, or something I do not want but still need. And each one must be pried from its place, picked up, turned over, and examined. From the boulders to the tiny mossy pebbles each must be placed in one of three categories; keep, give away, throw away.

I keep wittering on about living a "simple" life, a spare life, but it is amazing what collects when you sit two years in a single spot and you don't feel like keeping up with the stuff that streams into your life, or you are not motivated to do so. Or you are brave enough. Mountains of paperwork you stick in a drawer, envelopes with addresses you mean to write down - some day.

Clothes you buy and will never wear, that do not fit, or that itch, or pull, or in a colour that made everyone ask, "Are you ill today?" But we have ordered a large dumpster bin for the condo, which arrives on Thursday, and are having a swap meet next Saturday, which has motivated me to attack Mt. Clutter and reduce it to a sweet green hill.

I had hoped to trim down enough to get rid of a very large and hideously ugly storage unit in our bedroom, but I'm not sure I can get find places for everything that is in it elsewhere. If not, is there justification of any kind for ditching it and buying a less disgusting piece of furniture? We dragged it from the curb to begin with and even though I am an eco-tourist I'm getting too old to put up with such ugliness first thing in the morning.

Anyway, that is the end of my break. I have to strap on my gear and get back to picking through rocks and pebbles. And from now on (I've said this before I believe) one item in, one item out and take care of the paper stream as it comes through the mailbox!