Bite Me.

The drive to the doctors office was the perfect opportunity to work on my tanning, while knitting, and listening to an audio book. Multi-tasking is the ultimate form of distraction. Yesterday we had our consultation with the surgeon, basically a preview of what happened today. I usually don’t want to know what they are planning on doing to me, because then my overactive imagination starts churning out the most gruesome picture, and I can feel my heart-rate start to beat faster.

Twilight on the bluff

The condo is very comfortable, and feels like it stepped out of the “beach bungalow” set of a campy movie, classic down to the carpeting. A high cliff overlooks the beach across from the condo complex. There is an elevator down to the beach, but it doesn’t go all the way, so there is a incredibly steep ramp to get down to the sand. If we managed to get down and retain control, we’d never be able to get me back up it. We stopped in the parking lot of the beach/park to watch the sunset for a few minutes yesterday. Its always nice to end the day with the peaceful glow of a pink sky.

Most of today was spent inside the clinic. I had the CCSVI procedure, and a PICCline put in. It doesn’t hurt very much now, but I am not supposed to use my arm, which is what is most irritating! Its in my right arm, my dominant, which will make everything more annoying for the next however-long I have this line in. I can only hope it doesn’t last too, too long (whoops! did I say that?).

Surgeon Dr. Arrata, explaining arm-choice

It was decided that versus making the incision for the angioplasty in my groin, that the hole in my arm that my PICCline would be fed up through, could work for both procedures. One less cut. The catch was they could only do the CCSVI treatment through my right arm, even though I really wanted my PICCline in my left arm. It wouldn’t have been the end of the world for me to have 2 incisions, but still, I am happy with one less.

A port-o-catheter looks like a wonderful idea, too, from a doctors perspective, although until they have had a needle poked into their chest, they can’t fully appreciate how serious a decision it is for a patient to agree to have one. Luckily, Mum understood that I would never have a port again, and that a PICCline would be just fine, thank you very much. We have been waiting for months to get this line put in, hoping to do both procedures at the same time. Finally after having no antibiotics for months, I will be able to start them again. Oh boy!

The theater

The clinic is very large, the kind of place where you might end up getting something else done if you went to the wrong operating theater. But they seem very organized, so this idea didn’t occur to me until just now, thankfully.

Some people have difficulty understanding that when I say I am in a lot of pain. I realize now that the tendency is to use words like ‘pain’ where often times one means ‘aching’ or ‘discomfort’ or ‘soreness’ or ‘tenderness’. Its kind of like the word love. The ancient Greeks had 5 distinct words for kinds of love; agápe, éros, epithumia, philía, and storgē. Selfless love (Christian), romance, attraction, friendship, and affection. Don’t you wish you had those awesome ancient designations when you want to tell someone “i love you”, just not that way :P. ~

Helping, reaching, holding, moving. People hands gripping me are hotwhitepain, and I can’t speak. Its like my brain has been shut off and all that’s left, all that I can think about, is the agony, that I can’t even shout out to tell them to stop. While I was in the operating theater, the nurses kept grasping my arms and legs, in an effort to move me, even though both my mum and I explained I would probably pass out from the pain of this and be disorientated upon awakening. I am fine to move by myself, if people let me move at my own speed (which isn’t that slow).

I blacked out before they had even started doing anything to me, so of course I was terrified when I woke up. To find yourself on an operating room full of blurry strangers who are prepping you for surgery is terrifying. I tried to explain to them that I didn’t understand what was going on, that I wanted them to stop. Below the surface I was hysterical, repeating over and over again, like a calming mantra “What’s going on?”, “What’s happening?”, “What are you doing?”. I was mostly ignored by the nurses who would occasionally throw out an ‘everythingisokstaycalm’. I was of course terrified to find my arm in the hands of strangers who were scrubscrubscrubbing with iodine in preparation for the surgery.

Apparently, most people who are having the CCSVI done, have an incision in their groin, and then the angioplasty tubes (is there a word for them?) are sent up to your neck through this whole. Luckily, because I was also having the PICCline inserted in my arm, they could use the same whole to do the CCSVI procedure through. One less cut = sign me up! The drawback was they could only do the CCSVI procedure from my right arm, meaning my PICCline had to go into my dominant arm. The line can bleed if you are doing activities with arm that has the line in it, and can be uncomfortable, which is why I would have preferred my LEFT arm. Alas…

The people in the operating room became a little confused, before the surgeons entry, and also prepped my groin area (they said ‘groin’ but it was more like hips). I of course was super confused by this point, as the nurse told me that I was having a PICCline put in (no mention of CCSVI in operating room), and that ‘everythingisok’. I was at a loss of why they would have to put an incision in my groin in order to place a PICCline?? Naturally, I felt like these nurses were mistaken, and perhaps that they even had the wrong patient, so I asked repeatedly if they could go chat with my Mum and the doctor again, because this didn’t seem right to me. It wasn’t right, based on the information just given to me. By this time, I was so panicked that I was starting to have difficulty breathing, even with the oxygen. Near hysterically yet silently crying, I just kept repeating my wish that they would a) tell me what was going on, and, b) double-check they were doing the right thing.

Just before the doctor began to do the procedure, I passed out again, this time for what I suppose was longer. I woke up to one of the nurses hitting me on the head and shoulders, causing terrible agony to resonate through me with each blow. I suppose she was tapping me hard on the head to see if I was awake or not (OMG some people are just a little insensitive. i can’t say the other word I’m thinking because young lymies might read this…). The nausea from the horrific pain almost bawled me over, although I was lying down by this point. I am a weak bunny strapped down to a table, overwhelmed by the field of sterile blue, with no idea what is happening.

The only thought that does not occur to me is the only one that might have had any chance of stopping the proceedings, which would have been to sit up. Although on reflection, they might have forcibly restrained me, or given me something to calm me. Neither would have been a great option.

Everything is prepared and in its place, except me. An injection of lidocaine to the arm, and this should be the last thing I feel touching my white-hot arm. I am on quite a heavy arsenal of analgesics; Fentanyl patch (50), hydro-morphone, and IM ketamine (80) at night. Even these things do not drown out most of the pain. Perhaps it was that my body is used to these sorts of pain meds, or the doctors misjudged my weight, but the shot of lidocaine in the arm didn’t cut out the pain of the incision, which was very sharp through all my terror. I was now beyond petrified thinking that they are cutting me without anesthetics as punishment for the trouble I have been causing in the operating theater. I tried to say out loud something like ‘I can feel that’ or ‘That hurts!’, but I am not sure my lips were obeying the edicts of my brain at this point. I assume they weren’t, because they didn’t stop, or ask me what was wrong, or tell me again that everything was OK – even though it wasn’t.

When I finally was returned to the recovery room, trembling from the emotional and physical exertion, plus the pain, I tried to explain to my mum what was going on. But by this point, the breathing problems that had started in the operating room (after the injection of contrast dye) were starting to make black spots appear amid all the sterile white of the curtained room I was in. This has happened to me before, although I forget to mention it, that the contrast dye given during MRI’s or x-rays has made me feel as though very strong hands are pushing downward on my chest, making it impossible to take a breath. I tried to convey this to the nurses, but I am not sure what I managed to say, because a few minutes later I was having some very strong pain meds put through my new PICCline. I was lost for a few minutes in the peace of strong medication, and by the time I resurfaced, my breathing difficulties had all but vanished, the dye pushed deeper into my system.

normal colored hands

When I was about ready to go, I was touching my legs gingerly as I was slipping on my pants. I cannot explain what felt different about them, but there was an odd sensation in them, that it has taken awhile to find a word for. I suppose I noticed for the first time in along time that there was a feeling from my touch, that it wasn’t just the numbness I had known for so long. On closer inspection, and with prompting from Mum (who knew what the procedure could do), I also noticed that for the first time in years, my hands and feet were warm, not hot and clammy, nor ice cold and unmoving, but a regular ‘I’m-not-too-hot-nor-cold’ feeling. Lukewarm. And not purple/red/white/blue, but a fleshy peach color. This was so surprising!

I had no recollections of any of these proceeding at all, as I was discharged after a few hours, and was eating some bland foods in the car. It wasn’t until hours and hours later, with an emotionally unsettled feeling in the intervening time, that these memories, clear as anything, came back to me. I was lying in my darkened room, alone, and in pain, and I am not sure if it was because I had finally calmed down and was beginning to relax, or perhaps the fresh bouts of pain brought on the old memories. I just know I was crying hysterically again, and trying to tell my mum and Nancy that the nurses had hit me (which was what I remembered most vividly), then the rest of the ordeal following. Where did these thoughts come from? How come I can’t remember what I ate for dinner, or what we were talking about 3 minutes ago, but remembered all the traumas of the OR. It’s not fair. Perhaps the memory was seared into my mind because of the shock of the experience.

All in all, it was a very trying day, and I plan on relaxing the rest of this weekend.

It seemed highly unlikely that of all the places to see an old friend from Victoria, Southern California would be the place. I’ve known Roy since we were in grade seven (or around then?), and we’ve been good friends for awhile now. How incredibly lucky is it that we ended up seeing a doctor in a) beautifully sunny SC and b) close to where Roy goes to school? LA looks pretty close by on a map, but Roy missed a few connections, and it ended up taking him close to three hours to get here!! The whole day was really just a comedy of errors. It always feels like a friend has been away too long, even if its only a few weeks! We had a few hours to catch up on news and chillax, which made me forget all my anxious anticipation of uncomfortable procedures in a few days. A laugh was just what I needed…certainly the best medicine!

Waiting for zee choo choo train (not to be confused with Roy the Cho-Cho Train :P)

Salad at the station

It has been an exhausting few days. We arrived in sunny Southern California, to get a PICC line and the CCSVI procedure done. In my anxiety, I feel all the dirt from various terminals on me, no matter how many times I was my hands and clothes.
The boat trip over to Vancouver was fine as usual, if maybe a bit louder with a lot of happy travelers. I am in a great deal of pain, and feeling very anxious. The feeling of hot jolts of pain coursing through my bones is making me quite fussy, unable to sit still of settle on doing anything. I really just want to stay home and not do anything, except maybe keep knit my multi-colored socks.

Patient herons, in the marsh beyond Tsawwassen ferry terminal

We ended up coming back down and sitting in the car, watching the sea through the glassless windows. Although it is very loud in the hold, at least the sound is constant, a steady roar of engine and waves that is easily drowned out by the calm reader giving voice to “Atlas Shrugged”. I’m on a classics binge currently, and was in the mood to be cheered by some jolly works of sci-fi, my Ayn Rand on my iPod, a paper copy of “Brave New World”. Pure literary bliss. It has never been difficult for me to keep the plots of many different books in my head, so I almost always have a few on the go. I especially like reading books that complement each other, in theme or style. Makes for quite inspired reading, and interesting insights.

even in summer, Mt Baker is dipped in snow

 Upon debarking from the ferry, newcomers are greeted with the picturesque views of the almost pristine breakwater, container ships offloading, the peaks of mountain dipped in snow, farmland, billboards, a jumble of oxymoronic images.

My Aunt Nancy met us in Vancouver, and we spent all of today traveling. An early departure, and much moving around (yes, I know in a wheelchair you don’t have to do much physical work, but just looking at everything and smiling makes me feel faint with fatigue) has left me greatly weakened. I hope that the medicine I will start in a few days will give me more strength, but I highly doubt that it will work wonders that quickly.

We’re staying in the Laguna Beach/Dana Point/ Newport Beach area of Southern California. Our drive along the coast was most enjoyable, and the sight of so many white beaches and baby blue waters cheered me greatly. Any beach reminds me of happy times in my childhood in the Bay Area, always playing or walking by the water, using the ocean as a landmark for finding my way around places. We have already looked into which beaches have beach wheelchairs and boardwalks, so there are many options we can visit. Across from our condo, there is a bluff, below a beautiful beach, which I look forward to exploring. Or just lying in the sun, listening to the music of the waves.

Veggies galore!

We stopped at Whole Foods on our way home, and I was in a vegan/wheat-free paradise. I ended up ordering a sandwich of BBQ tofu and mixed vegetables, which was to die for! Where could I ever order a vegan sandwich at home? The answer is at chez moi, and no where else. Needless to say, although I was almost too exhausted to eat, I made short work of this sandwich, sitting outside in the sun outside of the grocery store. Pure bliss.

The very best and oldest vegan restaurant in Victoria (and only all-vegan bakery!), Green Cuisine, had a fire a few weeks ago. Keeping my fingers crossed that they will be open again by the end of the summer. In the meantime, I thought I would celebrate my love of GC by baking some cookies from their cookbook of “Best Gluten-Free Recipes”. I altered the recipe quite a bit, as I am wont to do, but they turned out to be the best darn cookies I have ever eaten. Period. Exclamation point! Perfection, in a carmely-ooey-gooey-crispy cookie.

For all those who just balked at the words “vegan” and “gluten-free” (and may I throw in “sugar-free”?), please, please don’t be so quick to speed-read the rest of this post! These cookies will change your baking perspective. They will revolutionize the way you dip cookies in milk. Cooking without the pesky wheat, eggs, dairy and cane sugar, leaves room for more healthy and delicious ingredients, such as brown rice and oats, agave, and olive oil. Unlike a lot of what we might call ‘health-conscious’ baking, these ingredients are probably things you already have at home! You can have your cookies, and not be stuffing yourself full of ‘junk’ food. It can be done! Go out on a limb with me, and bake these. Bet you can’t eat just one.

Perfect golden brownness

* A note about flours: If you don’t happen to have rice or oat flour, simply take rice grains or oat flakes and put them in a food processor (a blender might work…never tried that) and pulse it until it become ‘flour’ consistency. Voila! Wheat-free flour was never so easy!

Ingredients
3/4 cup oat flour
2/3 cup brown rice flour
1 1/4 cup oat flakes
1 1/2 cup rye flakes or more oat flakes (for something totally w-f)
1/2 cup coconut
1/2 cup almonds (or other fav nuts, 1/4 cup fav seeds)
2/3 cup dark chocolate chips
3/4 teaspoon baking powder
1/2 teaspoon baking soda
1/2 teaspoon salt
opt: 1/4 teaspoon xanthan gum (in place of gluten (found in regular flour), not called for in original recipe)

2/3 cup olive oil (or liquid oil of your choice)
1/4 cup rice syrup (or local honey, for a non-vegan version)
1/4 cup agave (or more honey or maple syrup)
1 tablespoon vanilla

Measure out and mix all the dry ingredients. Add the wet ingredients to the dry, and stir. The resulting mixture will be very crumbly and dry, so don’t worry. Oil or line a cookie tray. Squeeze/shape the dough into balls as best you can and shape them on a cookie tray, then flatten them.

Bake at 400 F, for 9-11 minutes, until golden brown. Wait a big for cookies to firm up once removing from oven, then transfer to a rack to cool.

Best nibbled with a glass of icy non-dairy milk. Freezes beautifully, so you can bring them out for special treats!

(For a Oatmeal raison variation, subsitute raisons in for chocolate chips, and add a 1/2 teaspoon of cinnamon, and a 1/4 teaspoon of nutmeg (or a quarter of a nutmeg nut, grated.)

We met at the best bubble tea shop in Victoria, The Dragon, in China town, celebrating my friend Sarah’s birthday! The ‘bubbles’ can be best described as the texture of gummy bears, which look like fish eggs and taste like sweet rice pudding. Its certainly an ‘acquired’ taste, something you either love or hate. Luckily most of my friends love the fruity teas, so we meet here often in the sunny weather.

Just about everyone is home for the summer now, so it was nice to see all the people I hadn’t seen in a long time. Most of my friends have been in school abroad, others globe-trotting, full of stories of their adventures. We sat cramped around a table, conversations looping across and over each other, in our scramble to hear what everyone has been up to.  Its a comforting chaos, the sort of thing that happens whenever we get together, even when we were in middle school.