2016 Beach memories: Pictures worth 20,000 words.

Two years ago, I spent a few arduous days in L.A. with my mother and husband so I could have an appointment with Dr. Chia. Last year, we spent a few days on the Washington coast while I was very sick. We picked the closest coastal town to our house, so it was the shortest drive and my husband did all the work — I just had to get myself in and out of the car. I did it for the dogs, to see their joy on the beach, to try to make up for two and a half years of no adventures and lessened activity… but I was not in good shape.

This year, though… This year we took TWO TRIPS TO THE COAST. Again, all I had to do was pack (no easy feat — it takes me days) and get myself in the car. My angel husband, with good spirits, loads everything in and out and in and out of the car, including my mobility scooter, all my food, bedding, towels etc. I even brought my air purifier. I love being so low-maintenance.

Last June, was our longest trip since I got sick. We stayed in the same place in the same coastal town as we had in 2015, but I was feeling better than I had in years so, on the day we were meant to leave to go back to Seattle, we found a different rental and extended our visit for an extra two days. This new house was right on the beach and had a balcony. I had no idea the difference it would make to my experience. The first rental was further inland and had a fenced-in yard and trees enclosing the garden. It never occurred to me that a view might be nice — might even be soul-enlivening — I was just happy to see four different walls. But the simple act of gazing at an expanse of nature, even from inside a house, is everything when you’ve been housebound for a prolonged period. That first night, when I saw the vast black sky punctured with millions of bright stars, I started weeping. When was the last time I really saw the stars? I will never forget that moment. And the next day, sitting on the balcony, watching the waves… It didn’t even matter if I was feeling too ill to get to the beach. The funny thing was, I experienced none of that Oh-I-feel-so-much-better-near-the-ocean “locations effect” that so many people with ME report. If anything, I was taken down a notch by the wind, the marine smell, bonfire smoke at night, trying to manage my temperature fluctuations etc. Plus, there were, of course, a few difficulties for my sensitive system (a house on stilts that shook so violently, I couldn’t sleep, overwhelming bleach smell in the bathroom, strongly chlorinated tap water, too many stairs), but it was definitely worth it.

Over four months ago, I wrote a Love letter to my sons as a preamble to the big post I intended to write about the coast trip and then, of course, never got around to writing it. I’m struggling at the moment (this post has taken me a week to put together), so I’m going to let the photos do the talking.

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Half the house packed in the car, ready to go.

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ROAD TRIP!

This was the first night we arrived. A beautiful crescent moon welcomed us to the coast.

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Some days were overcast…

… with dramatic evenings.

Some days were glorious…

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…with breathtaking sunsets (taken from the balcony).

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The beach is exhausting. 😀

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The couple next door got married on the dune in front of our house. I wound up talking to them the day we left because I wanted to send them the photos I took and, in a bizarre coincidence, it turned out the bride had been suffering with a similar illness as mine, had tried many of the same treatments, knew all the same doctors. We both got tears in our eyes. It was a surprisingly beautiful thing to talk to someone so freely *in person, not on the internet*, without having to explain anything.

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The flag on the left is where they were wed.

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We had no plans to go again this year, but our best friends wound up renting the house next door to the one we had in June, so, at the beginning of this month and at the very last minute, we decided to join them. I’ve gotten worse the past few months, so I knew I wouldn’t be able to participate as much as I would like to (the first night they all played cards and had drinks, while I was in the other house, resting. The second night they had a bonfire on the beach, while I was inside, resting), but there were wonderful moments of normalcy: Z. chatting with me over morning tea, without the time-pressure of a planned visit; my dogs’ excitement when they saw Aunt Z. and Uncle J. on the beach — missed members of our extended pack; watching their family fly kites on the beach; colouring with sweet Anna while she talked my ear off more than she ever has before; eating dinner at a table with a group of friends, with conversation, laughing and music playing in the background (<~ this most of all: just hanging out amid all the normal sounds, feeling part of a group); and the social time my husband got, just hanging with friends he hasn’t seen properly in years.

The only downside was my dogs are showing their age much more now than they were even four months earlier. I couldn’t use my scooter as much as last time because they simply didn’t have the stamina to walk distances and were both limping after our first short excursion. The last — and warmest — day, Bowie didn’t even get out of the car for more than a minute. He was pooped. And Riley just sat next to me like a sentry, wondering why I was lying on the sand. I fear it really might have been the last hurrah on the beach, which makes me even happier that I pushed myself to go and create new memories.

The boys were thrilled to be back!

Our best friends frolicking. 🙂

Bowie and sweet Anna flying a kite.

One day was dark and brooding and that night it stormed with 50 mph winds.

Another day was sunny and clear.

 

Small steps with payback… But new memories and happy dogs are everything.

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Return of the Frog Queen

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Madison, WI

I was living in this house when I was 21 years old. My roommate from college took this photo a few days ago when he was visiting Madison, Wisconsin and posted it on Facebook. I was slapped in the face with so many memories: lying in the dark back room in the summer, the only room with air conditioning, listening to music; drinking Mickeys and playing Tetris wars; breaking plates and smashing the Atari in a collective rock ‘n’ roll meltdown; smoking cigarettes all night on that tip-top balcony outside my bedroom, having conversations I thought I’d never forget. I lived there with 5 or 6 men — boys, really, we were just kids — I think I scored the best room because I was the only girl. That school year (1994 to 1995) and the few years afterwards were the most emotional of my life. I can’t really think of a better word to describe them. It was the loneliest and saddest time of my life before this chronic illness, but also the most memorable, the most adventurous, the most creative years I’ve experienced. And all of it is inextricably entangled with music. I’d once made a sign for my Mother’s kitchen wall that said (it was multi-colored like this): NEVER BE WITHOUT MUSIC and I never was. I have an obscenely bad memory, but everything I remember from those years has a soundtrack. I think maybe the only reason I remember any of it is because there was music playing during each scene, searing them into my mind. 1995 was also the only time I experienced depression before becoming housebound and I truly, un-dramatically, credit certain bands with saving my life.

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CD bliss, 1996

I’ve tried to listen to music a few times over the last four years, but it’s been difficult. First, because I was just too sick and was always striving for the closest thing I could get to silence. Background sounds are still difficult on a too-much-stimuli level, but as my headaches got better, I started to dabble in a song here and there and discovered that, even if I could handle the noise, the emotions unleashed were too much, like a tsunami against which I’d have to quickly close the floodgates for fear of drowning. Memories of sad times making me sad for who I was, memories of good times making me sad for what I’ve lost, regrets about past situations, gratitude for past experiences and abilities — all of it makes my chest start to heave and my breath catches in my throat and I go, “Oh, no way, not going there” and quickly switch to watching happy elephant videos. What I’d give to luxuriate in my old albums, in the memories they bring up and in hours of sobbing! And it would be a luxury — it would be cathartic and fun on some level to reminisce, but the indulgence would be far outweighed by the payback. My life is about equilibrium now; I try not to rock the boat. Plus, it’s really not as fun to go down Emotional Music Memory Lane without a bottle of whiskey.

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Kristin Hersh

Having said that, 15 months ago, my brother in Connecticut told me that one of my favourite singers, Kristin Hersh, was going to be in Seattle. I thought it was kind of funny (and kind of sad) that my brother on the other side of the country had to tell me what was happening down the road, but I never look at local listings because it’s a bit torturous to see what I’m missing. I decided to go. It was a solo show in a small, mellow venue where you could sit down and eat while watching. Seemed like the perfect way to test the live music waters. And it went well. It was utterly surreal to be in a public place, especially at night. I felt like one of those animals allowed to walk outside on grass after spending their lives in metal cages. I was unsteady, gripping my husband’s arm, looking uncertainly at the steps, the ceiling and lights, eyes darting around at the crowd uncomfortably, hoping not to be seen in case one of them noticed the outsider and stood up, pointed at me and screeched like that scene in the old Invasion of the Body Snatchers. It was a wonderful night, the hardest part was gulping down the sneaker-wave of tears when she opened with probably my favourite of her solo songs. Again, that unreliable floodgate. It was the music, yes, but so much more. I was out at a show — out at anything, actually — for the first time in two and a half years. I was normal. Or, at least, doing a good job of feigning it.

Tonight, I’m trying again. Jeremy Enigk is playing a show in Seattle and my sister has connections, so she’s going to set me up in the VIP or ADA section. I’m so excited. I had seen Kristin Hersh live probably half a dozen times before, so last year’s venture was noteworthy, but not a bucket list item. But tonight… Enigk’s band Sunny Day Real Estate’s first album Diary was part of the constant soundtrack in that Madison house 22 years ago, so it’s fitting that that photo showed up on Facebook a day before I found out about this show. I took it as a sign. I doubt I would love that album as much if I were introduced to it now, but back then there wasn’t much like it and these guys were college students around my age. And … THAT VOICE. It ripped my angsty heart out.

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my own private Idaho, 1995

I wound up fleeing the midwest in 1995. I drove alone across the country to Seattle (actually, to Bainbridge Island) during what would turn out to be one of the best four days of my life. No company, no mobile phones or internet back then, just me, a camera and my music. A year later, still lost in so many ways, I found Enigk’s solo album, Return of the Frog Queen, and, again, the timing was right and it became one of those keep-me-alive CDs.

So… tonight. I’m going to my second live show in almost four years and this time I have months of improvements under my belt. I haven’t slept well and I have a pretty bad headache (which is rare these days), but I’m not going to stay home to “be safe.” I may not know anything that he plays — I may not even like anything that he plays, that album is twenty years old, after all — but I’ve never seen him live, don’t even really know what he looks like and, if his voice can still do that heart-tug, stomach-clench wail, I might even let myself swim in the emotions for a change.
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LIVE UPDATE: He’s playing some songs I know, I really like the stuff I don’t know and his voice can still hit the sweet spot. I’m floating (not drowning).

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Jeremy Enigk

Title Credit

The Other Shoe.

Whereas my preparation for this trip was incredibly thorough (I will write a post on that later) and the journey down to California went off without a hitch, once we got there, things went a little sideways.

I’d never been to LA and it was a learning curve. I’m very grateful that my therapist warned me about the vastness of the area and I had a few friends on which to rely for info (Patrick and SGV, I’m looking at you). For example, I was told to look at Palos Verdes, which is a bluff above the city, overlooking the ocean. I thought it must kind of be like a bigger Queen Anne in Seattle, a neighbourhood on a hill. However, Palos Verdes has 4 towns on this hill. There are multiple airports in LA and they are all legitimate, proper airports. I know that sounds silly, but, in Dublin, there’s Dublin airport, in Seattle there’s SeaTac and some landing strips. I like to say, in Seattle it takes about half an hour to get anywhere — give or take 10 minutes. A childhood friend of mine lives in LA, but she lives hours away from where I was staying, to see her would practically be a planned road-trip. They are obvious differences — it’s a huge city, after all — but I needed to make a mental shift that I never did in London or New York, for example.

Anyway, I was told that the heat and air quality in LA were awful — refineries sit very close to Dr. Chia’s office and stagnant air plagues the whole inland city. I was also warned of mold issues in beach areas. I was treating this as an 8-day retreat with my mother, whom I see rarely, a week to let my husband have some alone time and a test away from my home and dogs for the first time since I got sick. I was concerned about picking a rental in an area that made it difficult to sit outside. I imagined languishing in an air-conditioned house the entire time, with the garden being too hot and acrid and my being too sick to venture out to a different area.

(Aside: I had a few people suggest things I should do in LA ~ go to the beach, see the glass chapel ~ and it baffled me that they thought I’d be able to manage things after a grueling journey that I can’t manage when I’m at home resting. People can never fully grasp how limited we are, even people that see us, know us, live with us. They can never know the constant tally of energy expenditure versus energy conservation that goes on in our brains. The almost-subconscious weighing of necessity, desire and payback. The ever-present knowledge of what we’ve done that day and what we still need to do before bed that dictates our every word and movement.)

So, I found an AirBnB rental that was in Rancho Palos Verdes. The host was extremely nice, said it was quiet, there was no mold and they rarely had to turn on their A/C. It was about half an hour from the airport and 25 minutes to Dr. Chia. As we drove up the hill, the temperature dropped from the high 80s to the high 70s; it was perfect. The house was beautiful, with an expansive view of the ocean and it was sunny, but not too hot. I rested in the garden and watched the sunset, drinking up the view, so deeply submerged in gratitude, I thought it might overwhelm me. I never thought I’d be anywhere but Seattle again. Honestly, I thought I might not be anywhere but my house again. It was at once completely foreign and very familiar. I was taking in every scent and colour like an alien in our world, but it also felt completely normal, like the past two years were only two weeks and I was navigating just another part of the earth, like I have so many times before.

Then the other shoe dropped. Huge, billowing rolls of fog came in off the ocean and the humidity shot up and the temperature dropped. The damp soaked into my bones and gave me a chill that never really went away.

The fog rolling in. In person, this was huge ~ the photo can't do it justice.

The fog rolling in.
In person, this was huge ~ the photo can’t do it justice.

I went back into the bedroom to rest and it reeked. It was like walking into a wall of mildew. The en suite bathroom had no fan and the shower head couldn’t be turned to stop the water from spurting all over the floor. The closet was moldy, the duvet was musty and the blanket was crusty with something spilled on it. There was more, like stained pillows, toilets backing up, dirty dishes in the cupboard, moldy food in the fridge, a filthy oven, loud construction in the lot next door, but none of that bothered me like the smell of the back rooms and bathrooms. Even my husband, whose nose doesn’t work as far as I can tell, commented on how bad the bathroom was. The whole house felt damp and heavy. Between 7pm and 11am, the humidity never dropped below 78% and the temperature was in the low 60s. I didn’t have very many warm clothes with me, but I put them all on. Every day, I would sit on the couch, wearing three layers of clothes, and wait for the first beam of sunlight to break through the clouds and then go out to that spot and bake myself, like trying to dry out a water-logged book. The day we left, the humidity was 96% and it was completely overcast. That’s, like, raining indoors.

RPV bedroom on the left, my room at home on the right (humidity on the top, temperature in Fahrenheit on the bottom). I've never been so happy to be back in Seattle dryness in my life.

RPV bedroom on the left, my room at home on the right (humidity on the top, temperature in Fahrenheit on the bottom). I’ve never been so happy to be back in Seattle dryness in my life.

After much deliberation, we decided to leave early. I was fine for those few hours that the sun was up and I could be in the garden, but with the forecast calling for a chance of rain and even more clouds, I had to get out. My breathing felt heavy and I didn’t know what I was inhaling while sleeping in that room, so I didn’t have a “safe” place to lie and rest. So we changed our tickets for the evening flight the day after my Dr. Chia appointment. There were only two flights a day out of Long Beach Airport and the morning would be too difficult on my system. If I don’t rest in the mornings, eat properly, poop properly, hydrate and salt properly, I tend to have crashes of one sort or another: blood pressure, blood sugar, weakness etc.

Note to self: don’t choose the last flight of the night when you are sick, in a wheelchair and on a special diet.

Our flight was scheduled to depart at 7:25pm, which was already pushing it because I wouldn’t get home until around 11pm, well past my bedtime. We were told the flight was delayed at around 7:15pm — there was engine trouble and a mechanic was coming to take a look at it. Of course, I knew immediately it would be canceled and it was the last flight to Seattle that night. They could have moved quickly and gotten us to LAX for one of a number of nonstop flights to Seattle, but, instead, we waited over two hours to be told at 9:30pm that the mechanic had finally arrived. My husband actually had us transferred to a flight leaving out of LAX at 8:55pm, but we wouldn’t have been able to make it there in time. Actually, we probably wouldn’t even have been able to get my suitcase in time. We asked about getting a hotel and were told there were no open rooms in the city. No hotel rooms in the whole of LA. Hhmm. By then, I had finished all the food I had brought for the flight (not much: carrots, cucumbers and a bunch of Terra vegetable chips) and was curled up with my feet on a chair and my head on the wheelchair, feeling woozy and slurry. Through all of this, my heroic mother stood in line to talk to a gate agent with the throngs of other people and did everything she could to fix the situation.

I had already spent a lot of time on my phone looking for a hotel to no avail, but I didn’t trust my efforts, so I asked my husband to help from Seattle (he had only come to L.A. for two days to drive and help get us settled). He texted me three motels that he found through Expedia, but we didn’t know if they were places that Alaska Airlines would refund, plus my mother still was holding out hope that the engine would be fixed, so we held tight.

The little engine that couldn't.

The little engine that couldn’t.

When we finally got word that the flight was canceled, I wasn’t in the best shape. Two of the places my husband had found were now full and the last one was a $60 motel in Anaheim, charging $657 through Expedia. In desperation and delirium, thinking the airline would reimburse us, I booked it. And, when I called to tell them we were on our way, got thoroughly spooked by the very shady sounding person who answered the phone and seemed half drunk and not the type that should be in charge of a motel. Or even, of operating a phone. I had a meltdown. We were the last ones in the terminal, maybe in the whole airport. Everyone else had, presumably, gone back to their friends’ or family’s homes. My mother was busy begging the gate agent to help us since I was so ill and needed to get home. They offered to call the paramedics for me. People with M.E. love emergency rooms. I said, “If it’ll guarantee me a bed with no doctors bothering me, sure.” My mother said, “She’s not that kind of sick; it’s a chronic illness.”

They told us there were no seats on any flights the next day. I melted down a little further. The gate agent said we could fly out of LAX at 7am or John Wayne Airport at 12:30pm. We chose John Wayne because it was closer to the Anaheim dive that I was trying to get the nerve up to go to, but we couldn’t get the disabled bulkhead seating and we couldn’t get two seats together. Then my husband texted that there had been a mechanical glitch in Expedia’s system and my shady motel reservation didn’t exist. Oh, thank god! Because I had already realised Alaska would not be refunding any $657 for a dump in a different city. But… that left us with the airport floor to sleep on. Melting down…

My sister, A, who was on a camping trip in Eastern Washington with no cell phone service had asked if she could help. So had my friend, Z, who was probably asleep after working and caring for her baby all day. I didn’t think there was any hope. I had tried (ineptly) to look online, my husband had tried from Seattle, the gate agents had tried every contact they had… even the airplane crew was stranded at the airport.

At 10:41pm, my sister dropped what she was doing with her friends to help me, but I knew it was hopeless. I had a a new fun symptom develop around this time: my voice started coming haltingly, words coming out broken. It sounded like I was having a bad neurological problem, staccato speech, each syllable coughed out separately and slowly. It scared me. The incredibly kind and empathetic gate agent helped us get my suitcase and then wheeled it upstairs so my mother could push my chair. She showed us a couch where I could sleep and got us water. I got out my pillow, sheets, eye shades and ear plugs and texted my sister that I was done, signing off.

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That was 11:22pm. At 11:52pm, she texted to say she had found a room in a hotel — not a motel — for $164 — not $657 — across the street from John Wayne Airport — not in Anaheim or Palmdale, which is where the plane crew eventually found a room, 1.5 hours away. How could it be possible? I called the hotel: “Do you really have a room? For two of us? Even if it takes an hour to get there??” “Yes, Elizabeth, I talked to your sister, it’s all ready for you.” Disbelief.

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We packed up and — another angel restoring my faith in humanity — a woman also sleeping in the airport helped wheel our suitcases downstairs and outside the airport. Everything was deserted. The airport was effectively shut down. Tumbleweeds. And, then, as we were searching for a taxi number, one pulled up to drop someone off. Heaven sent. $75 later, we got to the hotel, they had a wheelchair for guests and a man helped us to our room. It was gorgeous. Two beds, a big balcony, swimming pools… By 1:30am, I was in bed. It was glorious. My sister moved mountains from the middle of nowhere and I will never be able to thank her enough.

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I didn’t sleep very much, of course, but I was able to recover more than I could have in the airport. My voice went back to normal, although I woke up nauseous, shaking like a leaf (not blood sugar) and with odd heart tremors. I mentioned how I felt on Facebook and Erik Johnson, of extreme mold avoidance fame, answered: “Take a shower. Wash your hair extremely well. Change into completely different clothes and put the ones you are wearing in a plastic bag.” It was like someone slapped me upside the head. Of course. I am in the habit of not showering in order to conserve energy, but showering is the only way to decontaminate — if not toxic mold spores, at least airplane germs and travel stank (from which I was definitely suffering). So I showered and changed into the only other clothes I had: a fun mix of compression stockings, shorts, tank tops and pajamas. I drank a salt and potassium water and was good to go. The shuttle to the new airport took about 3 minutes (again: how did my sister do it? Right across the street!) and the flight home was uneventful. My body even cooperated having only survived on plantain crackers, Rice Chex and vegetable crisps for 24 hours. And my husband greeted me at the airport with chicken and kale bone broth. Liquid life force.

Home is where the broth is.

Home is where the broth is.

Although I don’t think the journey to see Dr. Chia was worth it (as in, I wouldn’t advise someone else in my situation to go — but more on that in my Dr. Chia post to come) and the rental was not ideal and the journey back was filled with Travel Worst Case Scenarios, I don’t regret the trip at all. I didn’t feel terrible after either flight. I thought they might be carrying me from the airplane and that I might spend days in bed with my meningitis-type symptoms in full flare, but that wasn’t the case. I was actually just fine. The worst I’ve felt since before I left is the last three days and I don’t even know if it’s payback from the trip because it’s so delayed. It could be something in my home. It could just be M.E.

The whole expedition cost a small fortune and it was too much planning, packing and mental gymnastics for the few short days we were there, but I did it. We did it. My mother and husband were unimaginably brilliant and took every precaution to make it successful. And now we know how to do it, if we ever have to again. And I got to spend time with my Momma and create new memories. Priceless.

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Going to California in Pictures

I will post about my visit with Dr. Chia and I will write about successful travel with this illness, but first let me tell you about the trip to California.

On the way to the airport. This was the furthest south I'd been in two years.

On the way to the airport. This was the furthest south I’d been in two years.

On the train in SeaTac airport, feeling like a normal person going on a trip (besides the wheelchair and mask).

On the train in SeaTac airport, feeling like a normal person going on a trip (besides the wheelchair and mask).

You can't get much better than this. Flying over Mount Rainier, leaving Seattle. And an unexpected side effect of my illness: my fear of flying is gone. I'm living on borrowed time, what do I have to fear? :)

You can’t get much better than this. Flying over Mount Rainier, leaving Seattle.
And an unexpected side effect of my illness: my fear of flying is gone. I’m living on borrowed time, what do I have to fear? 🙂

Driving to our rental: 2 military helicopters flew right over the bridge.

Driving to our rental: 2 military helicopters flew right over the bridge.

Our beautiful garden away from home.

Our beautiful garden away from home.

How do you explain what it feels like to spend time somewhere other than your house for the first time in years? To see the ocean when you never that you would again? To feel alive when you once thought you might not live? There are no words.

How do you explain what it feels like to spend time somewhere other than your house for the first time in years? To see the ocean when you never that you would again? To feel alive when you once thought you might not live? There are no words.

Our first night.

Our first night.

Creating new memories.

Creating new memories.

The Locations Effect*

Here’s the thing. I don’t think it’s coincidence that it has been so humid in Seattle this month and I have gone downhill. I have been using the dehumidifier every day and I didn’t have to turn it on once in the last six months. This is something I am so reluctant to write about because it causes me such terror and grief. More for my husband than myself. If this climate, this city, this house is making me sick, I would move. I could make that decision today. When you lose your career and your social life, become housebound and fear death, there is nothing that seems too drastic or impossible. I’ve been too sick to go anywhere, see people, call family, read books, so what do I care if I have to leave the place I have called home for 19 years? Well, I do care, of course. I have been too immobilized by fear all this time to even consider it, let alone talk about it, let alone do it!

But, the most difficult part for me is that the hardship falls on my husband. He is the one that would have to sell things, pack things, clean things. He is the one with hard-won seasonal landscaping clients. He is the one that has poured his heart and soul into this home, tearing down walls and building bathrooms, replacing piping and electrical, building porches, patios, vegetable beds and fences, tearing out the furnace and installing under-floor heating, slugging through the crawlspace and sweating around the attic, replacing every shred of insulation that was infested by rats when we first moved in.

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He is the one that has spent 8 long years growing this garden oasis. Every single day that he doesn’t work — summer or winter — he has been in the garden doing whatever it is that people who love landscaping and plants do. The trees he has planted are glorious and you all know the fireworks show of flowers that I have documented here.

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He has done work-trade for plants and materials, used reclaimed stones and bricks to build paths and retaining walls… he has mulched and pruned and dug and mowed every day for 8 years and, until recently, I could never see the art that he knew would reveal itself. While I was confused by his choices, he could see the future colourful landscape and, one day, there it was… Ooohhh, that’s why you cut back that hedge so aggressively! Ooohh, all that green actually blooms eventually! That’s why you put that tree there! There was a reason for every brush stroke, only it took years to see the full painting. And we thought we’d have forever to enjoy it. My heart aches for him more than anything — that he might have to walk away from his slowly-created and lovingly-tended artwork.

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I know how lucky I am. I know I’m lucky to have a husband who takes care of me. I know I’m lucky to have had this home and to have had some savings. I know I’m lucky to have possessions in the first place to be able to sell. I could have started off from a much less stable position, without family support. But it doesn’t make it any easier. I don’t want to leave this house. My husband and I said our vows in the back garden. But, it is an inevitability because of loss of income. Leaving Seattle entirely is a different matter.

I have never taken Seattle for granted. Every year I am grateful that I don’t live with crushing heat and air conditioning… we don’t have freezing storms, frozen pipes, snow drifts, hurricanes or tornadoes…. don’t have to worry about mosquitoes, biting bugs, fire ants, huge spiders… I love all our doors and windows open 5 months a year and never having to think about insect repellent or ticks or West Nile virus…. I love the mountains and Puget Sound, the abundance of good food, farmers’ markets, clean water… I love the laidbackness and the passion of the people here… the music, art and theatre here… the politics, universities, the companies that make their homes here… I don’t want to live anywhere else in America…. But… what if?

seattle

Recently, Jen Brea, who is making the film Canary in a Coalmine, had some remission of her symptoms in Utah. I looked up today’s temperature and humidity in Salt Lake City and it is 88 degrees and 24% humidity. Here in Seattle, it is 61 degrees and 63%. Dublin, Ireland is about the same. My whole life I have lived in this climate and I need to test something different. I want to not only test a different house, but different air. If I could, I would travel to the Carribean or Europe, but the reality is, if I can be healthier in, say, Winnemucca Nevada, shouldn’t I go there? Can I separate living from all the things I thought equaled living? If I have no friends, no dogs, no home, no job, no possessions, but I’m not (as) sick, is it worth it? If I’m healthier, but I have no access to community because I’m living so remotely, can I be happy?

I can’t even begin to describe the lives of extreme mold avoiders. I have delved into that world for about six months now — watching videos, reading blogs and articles, listening to discussions in Facebook groups — it is harrowing and heartbreaking. No one can comprehend the pared-down, nomadic lives that people lead, leaving everything and everyone behind to travel the country looking for a safe place to sleep, their few possessions in garbage bags. Putting down shallow roots until something goes wrong — water intrusion, insecticide spraying, air quality changes — and then having to move on again to the next motel, campsite or friend’s driveway. I don’t know how they find the strength. But, my first step has to be getting out of here and testing how I do somewhere else. Part of me is hopeful and excited that it might make a difference and part of me thinks our little family will never survive such upheaval and I’ll somehow have to go it alone. As it stands now, I have to figure out where to go, when to go and who will take care of me until I can take care of myself. Gratitude pours from every fiber of my being for those of you that have offered to travel with me and help this quest: friends, siblings, parents and dear husband, I wouldn’t have a chance without you.

gardenriley

 

*The Locations Effect is the name of an online forum and Facebook group started by Lisa Petrison to report “on places where people have experienced improvement in chronic neuroimmune health conditions.” She is also executive director of Paradigm Change, a “not-for-profit organization with a primary goal of encouraging the exploration of the hypothesis that certain diseases involving the neurological and immune systems may be ones of toxicity.”

 

Doctor follow-up: symptoms, sleep, diet.

I haven’t taken vitamins or supplements in 19 days (except probiotics in the morning, magnesium at night and fish oil here and there). When I wasn’t sleeping, I decided to wash-out everything and, when I saw the Good Doctor last week, she wanted me to hold off on adding them back until I had challenged some foods. So, in the next month, I will be challenging soy and citrus, which I haven’t eaten in a month, and corn, dairy and eggs, which I haven’t eaten in a year. Honestly, I don’t know how I will identify symptoms ~ for no reason, sleep disappears and headaches hit me like a freight train. A few days ago I woke up with all over muscle pain: thick, heavy, stiff, achy, contracted muscles from tip to toe. I started waking up in the night again in a full-body tense stretch, jaw clamped down painfully, neck and back arched. It is coupled with daytime tiredness that stopped me writing, reading, talking… This wasn’t the bricked feeling of ATP running out in my cells, this was pure tired, like I was convalescing. It’s still with me today, but I want to write, so I force myself to sit at the computer.

I hate when old symptoms return. I thought perhaps spine pain and muscle aches were gone for good, but here I am with a new bottle of Tizanidine. I made a list of what could be causing it: Scooter? Adding back legumes? No supplements? Weather? Period? This week has also felt like awfully bad allergies, which shouldn’t be happening at the end of August. I actually had to take my inhaler and I couldn’t wear my cpap last night because my nose was plugged, even after multiple shots of antihistamine nasal spray. My headaches have mostly dissipated, only rearing up when I tweak my neck (which is about every other day; the nighttime muscle contractions don’t help), but I’m left with leaden cotton wool filling my skull and plugging my orifices. It feels like an orange on a toothpick, my neck too weak to hold the bobble head. I’m chalking it up to the weather. Seattle turned into a tropical rain forest this week. The temperature in my room is 74 degrees and the humidity is 74%. I keep saying, “It’s so close!” The only way to describe it.

Some good news: I’ve actually slept relatively well the last 7 nights ~ with only melatonin ~ which is miraculous. I have had a resurgence of mild night sweats for the first time in a very long time. But, we’re going to ignore that and the lack of deep sleep and concentrate on the positives: My current average hours of sleep, average time awake and average time to fall asleep:

An average of 8.5 hours sleep? First time ever in my life!

An average of 8.5 hours sleep? First time ever in my life!

38 mins awake, on average,  when it used to be 2 hours!

38 mins awake, on average, when it used to be 2 hours!

A glorious average of 9 mins to fall asleep! (this was tipped by the unheard-of ONE MINUTE it took me to fall asleep last night!)

A glorious average of 9 mins to fall asleep! (this was tipped by the unheard-of ONE MINUTE it took me to fall asleep last night!)

Other things I talked about with the Good Doc: She doesn’t feel comfortable with prescribing saline IV infusions, she is thinking about digestive enzymes, she wants to get my vitmain D levels between 50 and 80 (they were 30 last March), and she doesn’t want to do a tryptase test to look for Mast Cell Activation Disorder (MCAD).

If anyone is interested in my elimination diet, she said she thought coconut sugar would be okay (I haven’t quit sugar yet; I’m a junkie) and she wanted me to avoid xanthan gum, guar gum and carageenan. This is virtually impossible using dairy-free products, so I’m not taking it too seriously. My husband spent half an hour in Whole Foods reading the labels of nut and coconut milks: if you want to avoid sugar, cane juice and soy lecithin, you won’t be able to avoid carageenan (if anyone has more info, please tell me!). The best bet seems to be Pacific Almond Milk (which has carageenan and “natural flavor”) and Rice Dream, if you don’t mind the calorie and sugar content (I love the taste, but it’s high-glycemic load causes my blood sugar to crash).

She also wanted me to watch the teas I drink, since this is the only thing I drink besides water. You can get all the info about teas from this FoodBabe blog. Basically, I am trying to stick with Numi, Traditional Medicinals, Rishi (which is even more expensive than the other expensive organic teas) and maybe Choice. I splurged and bought this yesterday: Rishi Turmeric Ginger Loose Leaf Tea ~ how good does that sound for what ails me?! (I reckon, in the good ol’ days, I would have spent about that much on one cocktail, including tip, so I deserve it. I ignored the voice that said, Uh, you have no income.)

Lastly, I saw my endocrinologist for my yearly check-up. He increased my Levothyroxine to 37.5mcg five days a week and 25mcg on the weekends and kept my liothyronine at 10mcg/day. He also thought I should see an immunologist. I didn’t even know they existed. Not that I think they could find anything… except maybe help with my MCAD theory (that’ll be another post).

That’s my update. In a few days, my Mother is coming from Ireland for THREE WEEKS to help us out and take a bit of the burden off my husband. One of my brothers is flying across the country to see me at the end of September and my other brother, the pilot, has a layover here the same week. It’s so exciting! Gratitude today, once again, is for my family. They continually help me, encourage me and remember me.

My beautiful niece sent me this card. :)

My beautiful niece sent me this card. 🙂