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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DIETS Part III: finding a balance in low-histamine and figuring out how to eat more meat.

Some of you have commented on how exhausting/frustrating/crazy this elimination diet process is and I agree! It is incredibly time-consuming considering the research into studies, the searching for recipes, the phone calls to grocery stores, the time my husband spends shopping, menu discussion, and cooking time…! Since none of my diet changes has made me feel any different, it seems like a futile process, but here is what I always keep in mind:

Some people, such as my brother, eat a paleo diet even though they are completely healthy ~ they just want to continue to feel great. Or feel even greater. Some people are diagnosed with a thyroid condition or an autoimmune illness and immediately change the way they eat, trying to ease symptoms or stop the progression of disease. I never even considered doing these things! I had one odd health issue after another and never changed a smidge about the way I eat. The doctors didn’t mention diet, so I didn’t think about it. I didn’t even research the things I was experiencing. This blows my mind more than anything. My time was fully committed to my job, there was no room for anything else. Plus, they were intermittent episodes (I thought) and I was still feeling fine (I thought), so everything was easy to ignore. I had given up alcohol, which, to me, was the ultimate sacrifice ~ do you think I would give up anything else? No way!

One of the best gifts I was given was my OBGYN off-handedly saying, “You should eat some salt if you feel like you are going to collapse.” Uuuuhhh…? Why didn’t I know that? I’d been limiting my salt for years because I thought it contributed to the swelling. Couldn’t just one of the many nurses that have taken my blood pressure over the years mentioned salt to me? They always comment on how low it is and I always let them know I get dizzy. “Try increasing salt.” Just that simple.

The other thing I always keep in mind is my dog, Bowie. When he was young, he developed bumps on his skin. The vet thought it might be a food allergy, so we changed him to a limited-ingredient diet. Over the next year -maybe two- his skin got worse and worse. We changed his shampoo, we washed him more, we washed him less, we gave him supplements, he was put on Benadryl. His coat is a beautiful, deep, glossy brown; he looks like a stallion. But the bumps got bigger, his skin was like braille, and his skin started to have a distinctive infected smell.

Then, one day in the dog park, there was a hand-written sign tacked to a post: “Natural Balance food is killing dogs!” It had some other info on the sign that I can’t remember, but there was nothing online that we could find. Regardless, we paid attention because that’s the brand our dogs ate. And then a miracle: Literally, a few days after we switched their food, we had two puppies back in our house. We didn’t even realise that their happiness and activity level wasn’t normal for them because that’s all we knew for so long. They were DANCING. They were LAUGHING. They were running around like we had just removed their shackles. And then Bowie’s skin made a total turnaround: The bumps and smell disappeared incredibly quickly. We were very grateful, but my heart was broken over the poison we had been feeding them. If anyone had witnessed the change, they would know the radical difference food can make to health.

Lastly, I never want to look back and regret not trying diet changes. One would think that time ticks by slowly when you are sick and housebound, but, it turns out, the years speed by quicker than ever. I don’t want to be 50 or 60 and wish I had tried this in the beginning of my illness.

So, after 3 weeks of eating sort of low-histamine and a month of eating strictly low-histamine, I was not feeling any better. In fact, November and December were probably the worst months I’ve ever had, but I blamed that mostly on repercussions from the tilt table test and IV fluids reaction. I’m sure the stress around a new way of eating and hypoglycemia didn’t help matters, though, so I allowed in some histamine foods (bananas, berries, lemon, some vinegar, all greens, all meat), but I have continued to avoid the biggies (fish, spinach, tomatoes, eggplant, pickled/fermented foods, dried fruit, leftover animal protein). I needed to increase my protein intake to stabilise my blood sugar and started force-feeding myself meat. It was joyless, like taking medication. I am eating this chicken so my blood sugar does not tank in the night… (picture me sitting in bed, eyes closed, slack-jawed chewing a piece of cold, dry meat, grimacing as I swallow).

Around the same time, I eliminated oats ~ the only grain I had never lived without and had, in fact, been eating every day in the form of granola/porridge and oat crackers ~ and that left me desperate for breakfast options that included protein. Beef breakfast patties became a staple. We started investigating all the butchers in our area and my husband talked to all the grocery stores. We figured out when deliveries come in, whether they are fresh or frozen, how long since the date of slaughter, and we buy grass-fed, pastured beef and lamb, organic chicken and turkey, trying to source the healthiest and freshest meat to continue keeping histamine in check. My husband cooks the day we buy meat and then we freeze portions so I have meals at the ready. He still makes beef bone broth and chicken stock, but we cook it in a shorter amount of time and freeze it in silicone ice cube trays and jars. Beef patties for breakfast. Lamb shepard’s pie, portions wrapped in wax paper. Chicken and turkey breasts that can be thrown in soup or chopped on a salad or served with rice pasta and topped with veg and sauce (see FOOD! page for some recipes). Blood sugar crashes became much rarer.

Frozen broth

Frozen broth

My weird breakfast:
Grass-fed beef patty with parsley (antihistamine) and thyme (anti-bacterial, anti-inflammatory, antihistamine);
artichokes (contain quercetin, luteolin and rutin);
sweet potato (anti-inflammatory, contains rutin and quercetin) and butternut squash latke (antihistamine, anti-ulcer, anti-inflammatory and antidepressant action);
pomegranate (mast cell stabiliser, anti-inflammatory).
**Info from thelowhistaminechef.com**

Another weird breakfast:
Grass-fed beef patty with parsley (antihistamine) and thyme (anti-bacterial, anti-inflammatory, antihistamine);
sauteed with spiralized zucchini (has anti-inflammatory, anti-ulcerogenic and potentially antihistaminic properties);
cauliflower (contains anti-inflammatory vitamin K) and sweet potato cake (anti-inflammatory, contains rutin and quercetin);
apple sauce.
**Info from thelowhistaminechef.com**

I started to feel a bit better overall in late January, right after my bad pre-syncope episode during my period and right after I quit oats. By “better”, I mean back to where I was around September/October of last year. Able to walk 800-1000 steps a day instead of 500, my daily headache got better. But still not going into the garden, not stretching, not able to talk very much. One amazing change is my heart rate has gotten much lower overall ~ almost too low. In the 70s and 80s when I am standing up, not moving. Mid-50s sitting, watching tv. Low-50s and high-40s sometimes, while lying down in bed.

I refuse to believe that eliminating oats made the change.
A) Because I love oats too much and can’t wait to eat them again. I HATE savoury breakfasts. Hate them. Make me sick and nauseous. I was the one going to the Irish pub for a Sunday fry with my family and ordering porridge or fruit, yogurt and toast. Every morning is a struggle. It has gotten easier, but it’s not enjoyable. I don’t want acorn squash and beef and kale for breakfast and I never, ever will. It’s one of the reasons I have continued to search for “baked goods” recipes and kept rice in my diet (so I can have rice cereal or rice toast, if I like).
B) Because nothing can ever be definitive in such a changeable, cyclical disease. I also stopped taking my B-complex around the same time. That could have been causing my headache everyday!

Banana-Zucchini muffins: click image for recipe

Banana-Zucchini muffins: click image for recipe

In the final diet post, I will discuss AIP (autoimmune paleo diet) and all the other complications and sensitivities one comes across when researching online. It’s enough to send anyone straight to the nearest fully gluten-ized and dairy-fied bakery.

8 Food Products I Love Right Now (because I’m fickle and, any day, I may change my mind)

IMG_20131016_111405Organic tart cherry juice concentrate. This is from Dynamic Health. I alternate (or mix) it with Country Spoon, which is thicker but not as tasty (seems to be unavailable on Amazon at the moment). I drink 1 – 2 tbs of concentrate in water a few hours before sleep. It’s supposed to be a wonderful source of melatonin, but I find it really helps my pain. Montmorency cherries are the best and you want tart cherries, (e.g., Montmorency and Balaton) and not sweet cherries (e.g., Bing, Lambert, Rainier), although both varieties have healing benefits.

IMG_20131016_105812 (1)Turmeric! A potent anti-inflammatory. I put it in and on everything. Well, almost everything ~ it can get a bit bitter. But it disappears into soups and is wonderful in things like stir fries and curries.

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Flax oil. I’ve been using it on steamed veg to replace butter and on salads with balsamic vinegar. Yum!

IMG_20131016_110439I put this jam on the crackers my husband makes me with some cashew/ walnut/ almond butter. I originally bought it for these almond cookies (they would have been delicious if we hadn’t burned the bottoms). Ingredients = organic wild berries, organic apple juice concentrate, natural fruit pectin, ascorbic acid. No refined sugar.

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After reading about Dr. Cheney’s home brew on Health Rising, I started to drink this cocktail in the morning to increase my blood volume and, hopefully, my blood pressure and maybe alleviate some symptoms (I feel no different, of course, but I’m still doing it to get some salt and fluids into me). He recommends 3 to 8 glasses a day, but I’m still only doing one in the morning. Nu-Salt (called “No Salt” on the links) is potassium chloride, plus less than 1% of cream of tartar, silicon dioxide and natural flavor. I haven’t investigated an alternative potassium source without those added ingredients (I especially try to avoid “natural flavor”). I was originally using packets of regular table salt (packets are conveniently about 1/8 tsp, which is what the recipe calls for), but the ingredients are: salt, tricalcium phosphate, dextrose, potassium iodide, and sodium bicarbonate. Then my husband found these Real Salt packets at Whole Foods. Ingredients = Ancient Sea Salt. Excellent.

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Speaking of salt, I really like Herbamare seasoning salt. It has no MSG! I can’t quite believe it, but I’m hoping the ingredients don’t lie. It is salty and herby and it’s big enough to last the next five years! Ingredients = All organic sea salt,celery, leek, cress, onion, chives, parsley, lovage, garlic, basil, marjoram, rosemary, thyme, kelp.

IMG_20131016_110246Now that I am eating legumes, but not eating refined sugar or soy, Soy-Free Vegenaise fills the mayo niche for tuna, salads, sandwiches, wraps etc. I wish the jar was about half the size because I don’t use a lot of it and wind up throwing it out before it is empty, but, once in a while, it hits the spot. Ingredients = Expeller-pressed high-oleic safflower oil, filtered water, brown rice syrup, apple cider vinegar, pea protein, sea salt mustard flour, lemon juice concentrate.

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When my mother was visiting, she helped me with some recipes that could satisfy my chocolate craving and use the cacao powder I got for my birthday (thank you, E and G!). Both recipes are from Elana’s Pantry and both can be eaten right out of the freezer. They are both gluten-free, grain-free, dairy-free, egg-free, and refined sugar-free. The brownies are also nut free (although the next time I make them, I want to add walnuts). I can’t believe how good they are (probably because my palate has changed. While making my brother try one, I said, “I can’t really remember what real brownies taste like…” And, with an unswallowed mouthfull of my healthy brownie, he replied, “Much, much better.” :D) Here is the recipe ~ we substituted coconut sugar for the xylitol. When they come out of the oven, they are quite cakey, but when I froze them, it made them more fudgey = more yummy.

The fudge balls were much better than I anticipated (see? There are only two left!). We used pecans instead of walnuts because that is what I had on hand and I rolled some of mine in coconut and some in the bitter cacao powder, which nicely offset the richness inside.

Honorable mention goes to the homemade veggie broth, chicken broth and beef bone broth that my husband made after I decided that ALL store-bought broth and stock has MSG and nasty stuff ~ even the Kitchen Basics, which I’d relied on for so long. He froze them in individual servings, so I can just take one out, put it in a pot and add whatever veg and seasoning I want. I would have included a picture, but they’re not too attractive.

Stay tuned, I will write about the new doctor when I have the energy. He didn’t look at my list, of course, but he listened to me talk for an hour and a half, which was the longest I’ve talked in over a year!