November Update

[Written Sunday morning:] Every morning I get up and vow to write some of the things crawling around my head and gnawing at my brain and then every day disappears into other things: cooking, feeling like crap, interacting with friends in my facebook group, reading, researching, tv… Today, I’m sequestered in one room while the cleaning lady tackles the rest of the house and I want to do a wee catch up.

Two months after the horrific Cromolyn-induced crash, I’m feeling much better. Not as good as I was beforehand, but so much better than I anticipated I would. If it takes 3 or 4 months to get back to where I was, that will be great–much better than the years I thought it would take (or the never I feared might happen). When I got home from the AirBnB rentals, my husband had cleaned out my bedroom: no furniture besides the bed and bedside table, no more clothes or books, everything hoovered and wiped down with ammonia. He put a vapor barrier up at the top of the stairs–one of those plastic doorways used in construction sites or the house in the film E.T.–and the upstairs is strictly a dog-free zone. Oh, it breaks my heart not to be able to snuggle with my kids and it crushes me when they hear me moving around and whine at the gate we have across the stairs. Another downside is, I’m doing far fewer preemptive rests and meditations because I don’t want to leave them and go upstairs. It used to be our routine to head upstairs a few times a day and lie down. My Little Guy had the times programmed in his brain and would bark to come in from outside and look at me like, “Let’s go, Mama! You need to meditate.” That doesn’t happen anymore and my brain and body are feeling the effects. However, I will begrudgingly admit that it is really reassuring to know that I am spending 12 to 15 hours a day in minimal dander and dog hair. I wake up feeling cleaner internally. That has got to help my poor struggling body, so I’m very grateful for all the hard work my husband put into dedogifying the upstairs.

What it used to be like:

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What I see now from the top of the stairs:

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I haven’t been sleeping very well. Much better than when I was horribly sick, of course, but not as well as I was in the last two rentals. My sleep in that last rental was amazing– I would close my eyes at 11pm and open them at 7am. A few nights that I was there, I woke up after 8am! Never, ever, ever have I slept straight through for over 8 hours without waking up from crazy dreams or painful bones and muscles. It was glorious… besides the fact that I felt poisoned by the new Ikea wardrobes. I wonder if the off-gassing from the new furniture was somehow drugging me into a stupour? Also part of the problem is my apnea devices. I continue to avoid the CPAP because it wakes me up constantly, but the new oral appliance has its own issues. I got the Narval by Resmed, made by a 3D printer.

The white one is the bendy, light Narval. The pink one is the heavy, rigid nightmare I was trying to use before.

The white one is the bendy, light Narval. The pink one is the heavy, rigid nightmare I was trying to use before.

It is incredibly thin and light and bendy, which is everything I wanted and I’m able to fall asleep while wearing it… BUT. … I have worse TMJ issues than I realised and it causes so much pain. Every day, my jaw hurts, my temples ache, my head hurts and then, about once a week, I have a really rough, tense grinding night and I wake up feeling like my jaw is dislocated. It is painful to move and chew and clicks alarmingly. This can’t be good. So, I keep sleeping with no oral appliance or CPAP and I can definitely feel the difference in how I feel in the morning–less rested, more pain, but my jaw in tact. So, what am I to do?

I’ve started seeing my “physical therapist” again. Aka Magic Fingers. He is so wonderful for me. After a 3-month hiatus, the day I returned happened to be the day after he finished a course on strain-counterstrain for the nervous system. The teacher of whatever magic he does flew out to Seattle from the East Coast and trained a group of 30 practitioners. He said, “I’m one of only 30 in the world that have been trained to do this and you are the number one person I want to work on because your nervous system is a mess.” I keep my appointments with him no matter what. I even went last week when he was getting over a cold.

Speaking of colds, it has been 3 years and 19 weeks since I last had a cold. I’m amazed by that. I still live in fear of the day I catch a cold, especially since Dr. Chia said one virus could wipe me out and set back my recovery significantly, if not permanently. You may remember that he recommended I get IVIG to bolster my immune system and protect myself from all you sickies out there. Well, my MD referred me to University of Washington Immunology and they turned me down because my total IgG wasn’t low enough. So, I talked to my ND, Dr. W, and their clinic isn’t licensed to do it. On a whim, I went to see another ND, Dr. I, at a different clinic–mainly because they take insurance and I wanted to have a back-up doctor if I had to stop seeing Dr. W (who does not take insurance and, even with discounts for being unemployed, costs me too much money). The first thing Dr. I said when I came in was, “I think you need IgG.” Oh, bless her. There is hope for this treatment! But let me back up…

So, this new clinic requested all my test results in advance, they photocopied the entire binder and the doctor had reviewed it before I got there. They asked me to run my 23andMe results through MTHFRsupport.com and send them the results (so far, I’ve had 3 doctors tell me they know about methylation and nutrigenomics, but not a single one actually has addressed it. See some of my MTHFRsupport.com Genetic Variance Report here). The clinic has an IV infusion room, looking all dim and cozy, with plush recliners and blankets. They have a hyperbaric oxygen chamber! Something I have been curious about trying for over a year since I read Dr. Deckoff-Jones’s blog. And the clinic is 4 minutes from my house. Score. Dr. I ordered a load more tests and is willing to consider sub-cutaneous immunoglobulin first since I’m a scardy-cat about jumping right into IVIG (assuming we can get either of them approved by insurance, that is). A few days after our appointment, I went to the lab for a blood draw because she wanted to get updated tests and I see her again next week.

It'd be nice if they left some blood in my body.

It’d be nice if they left some blood in my body.

Speaking of test results (which can all be found here), I never mentioned the hormone panel and blood test results ordered by Dr. W in the last few months [bold type is for my benefit, so I can access this info easily when I look back). My varicella zoster IgG, IgM and HSV IgM were all positive. All coxsackie A viruses were high and all coxsackie B except for 3 and 4 (although 4 was high in Dr. Chia’s tests). EBV IgG was high indicating a reactivated infection. My total IgG was even lower than when Dr. Chia tested and, as I mentioned before, my thyroid was tanked: TSH, T3 and T4 all low. But the hormone panel was slightly alarming: almost everything was low: DHEA, progesterone, testosterone, estrone, aldosterone, androsterone, pregnanediol, tetrahydrocortisol and on and on. Not sure how concerned I should be, but Dr. W put me on topical DHEA (about 5mg rubbed into my abdomen in the mornings) and supposedly that should help something. It’s been a month now and the only difference that I’ve noticed is my period was 3 weeks late after I started it. My period has pretty much been every 28-29 days for 25 years. I just descovered today that it has MSM in it, which I’m not meant to have because of my sulfur issue. I’ll ask her about it when I see her on Wednesday.

So here’s what I’m taking currently:
Topical DHEA
Probiotics
Riboflavin-5-phosphate
Trace Minerals
Vitamin C
Vitamin D3
Vitamin K2
Fish oil
1/3 of a capsule of B complex #6
Magnesium
Biotin sporadically
Zinc sporadically
Charcoal sporadically
Quercetin sporadically
Gentian/Wormwood sporadically

I also started oil pulling a few times a week (when I remember) against my better judgement, but my nutritionist thought I should give it a try, so, why not?

I try to use my dry skin brush about once a week.

I am in my third month of Restasis and my eyes are worse than ever. They are never not bothering me. Swollen, itchy, tingly, burning, blurry, gritty. Always.

I have a new pillow, which is a god-send for my bursitits in my shoulders, but I had to let it off-gas outside for over a month. It still slightly concerns me, so I emailed Dr. Bob and here’s what he said: “We do not use flame retardants or any other harmful chemicals. On the Amazon site you can see our product obtained the Oeko-Tex Standard 100 Certification. This is a difficult certification to receive and shows this testing lab certifies the pillow is free of harmful chemicals. Oeko is the best know lab and certification for products to be free of harmful chemicals.” Hmmm… well, this thing stinks and I hope it isn’t off-gassing into my brain.

I love love LOVE having short hair. Can’t believe I didn’t do it sooner. Hair is such a nightmare when you’re sick and the cut disguises all the hair loss in the front.

Grainy photo, but you get the gist.

Grainy photo, but you get the gist.

What else?

I’m still on a modified AIP (autoimmune paleo) plus low-histamine-ish diet. I am not strict on AIP or low-histamine becasue I’m always trying to reintroduce foods back into my diet so I can have as many nutrients as possible and don’t develop even more sesntivities. I constantly warn everyone on my Facebook group not to take an elimination diet lightly and add back as many foods as possible as quickly as possible. It becomes a trap. Eating fewer foods causes a host of new issues (in my case, gastroparesis, worsening constipation and odd reactions that I never had before embarking on AIP). Also, the longer you don’t eat them, the harder they are to get back — both physically and mentally. Hence the reason I never eliminated ice cream, chocolate and packaged chips. God forbid I lose my unhealthy addictions. I need the soul food (although, I do really think one of these days I have to see if I feel better without sugar in my life. It’s just that it was easier to quit gluten, dairy, drinking alcohol and smoking than it seems to be to even contemplate eliminating sugar for a few weeks). One of these days I’ll write a post on what I eat on this diet, but, in the meantime, you can see photos on my Instagram account, if you’re interested (minus all the crap I eat–I’m trying to inspire people, after all, not cause them inflammation).

We ordered a free-range, organic, recently-harvested, fresh (not frozen) turkey for pick up today for Thanksgiving, but, to keep histamines low, we have to roast it right away (and then my husband freezes the leftover meat for me and makes bone broth from the carcass), so we are celebrating Thanksgiving today. We were going to have a get-together with our friends, Z and J, and my sister and her boyfriend (hence the cleaning lady), but it fell through, so the two of us are going to sit down to a 12-pound turkey alone. It’s ok. I’m thankful that I was feeling almost well enough to have some people over for the first time in 2.5 years. I’m thankful that I still have some people in my life to invite over. I’m thankful that I will have a yummy dinner and I don’t even mind that almost every meal I eat looks like Thanksgiving dinner and there really won’t be any different fun stuff. At least I’ll have turkey instead of chicken. And maybe the tryptophan will help me sleep!

Speaking of food, I’m starving and the cleaning lady is in the kitchen. I don’t want to get in her way or have to chat, so I’m trying to think of what else I can tell you all.

I made it to the freezing cold cemetery on the scooter for about 40 minutes a few weeks ago, wearing about 5 layers and carrying a hot water bottle. It was literally my first time spending some time outside in a month. The winter is hard that way. It really feels unhealthy to be trapped inside 24 hours a day. I have to make an effort to put on my coat and hat and go out into the garden. Please remind me!

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We bought a proper comfy dog bed for the kids seeing as they are arthritic and bony (it was on sale, has no fire retardants and is returnable at any time, even if used). It’s the size of a small country. 110-pound Bowie is thrilled when he can actually lie in it and Little Guy doesn’t relegate him to the crappy small bed.

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I found ants in my room one morning. They were running in droves all over the floor. It took days and days to kill them and there are still carcasses strewn about. It was pretty gross.

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I’m still going to therapy. It’s been great recently. He’s very interested in cultural history as a jumping-off point and that is helpful for someone who mourns the loss of Ireland and regularly starts blubbering over how powerfully I miss it.
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I have a lot of issues to work out there– An American by birth who never questioned that I was Irish, but wound up back in America and then felt rejected by the country I love… Marrying a man with an identical upbringing and thinking, “how perfect! We can relocate back home,” but it’s not home to him anymore… staying in America by default, year after year, but always wishing I was in Ireland and planning the eventual return… and then getting a disease that stops me from returning, so I have no choice, anyway. My therapist asked me if I’d be able to manage my illness better if I were living in Dublin and I said yes because my mother, aunt and best friend live there. And so does my heart. But it’s a difficult place to live and we’d have no money, so that’s not the answer.

dublin heart

Ok, I can’t avoid it any longer, I have to eat. And that was really dredging the bottle of the barrel for stuff to tell you about.

I’m thankful for all of you, too, dear readers. You have no idea. Love and thanks and nom nom nom gobble gobble to everyone this week. X

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Nothing Can Be Perfect

Not such a charm, after all. Every day that I’ve been in this rental, I’ve had the doors and windows wide open. It smells new, so I’ve taken precautions to air it out. After three nights, I finally mustered the energy to hang towels in the bedroom window to block the morning light and then didn’t open the window because I didn’t want the towels to fall… This coincided with a weather change and, because of the rain, I kept the other windows closed. It also coincided with my husband discovering a hornet nest under the eaves, so I started keeping the front door closed. This is all to explain what led to my perfect home away from home becoming an off-gassing cesspool.

I lay in bed, breathing the chemical fog, trying to sleep, trying to convince myself I was imagining it. The next day I told my husband, if I didn’t know better, I’d think I was coming down with a cold. My nose was all stuffed up and running at the same time, one ear was clogged, my eyes and throat were sore(er). That night, I couldn’t sleep in the bedroom. Did I reach some sort of chemical threshold? Or was this simply because the windows had been closed? After choking for an hour, I dragged everything to the couch: doubled over duvet on the bottom for my aching bones, pillow, sheets, top blanket and duvet… so much work for me, especially at 2am. An hour later, after being woken up every few seconds by rain hitting what sounded like a metal pail somewhere… Drip drip drip… Like torture every time I drifted off… I got up and put in ear plugs. At 4am, after waking up every time I moved because this couch is basically like concrete, I crawled into the bedroom, got an unwieldy camping mattress and wrestled it under the folded over bottom duvet. At 430am, I stumbled into the kitchenette and put duck tape over the blue clock lights on the oven and the microwave. At 5am, I turned off the porch lights that were keeping me awake. At 7am, I woke up from the morning sun through the window. Dear lord.

I asked the landlord about the IKEA wardrobes in the bedroom, knowing that I had bad reactions to my own IKEA wardrobe for so long and, sure enough, they are brand new a week before I got here.

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View from this rental's door

So, I’ve gone a little backwards. Two nights on the couch and a week steeped in chemical off-gas, I don’t quite feel as stable. I’m exhausted, heart palpitations started yesterday and I continue to have the cold symptoms above the neck and the flu symptoms below. I’m still going home today. I’m going to keep a segregated box of stuff separate that I don’t bring into the house in case I crash and burn and need to leave again. But, man oh man, am I excited to see my boys and sleep in my own bed. Fingers crossed that I can climb back up to where I was a month ago.

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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Caregiver, caregiver, give me some care, take me somewhere, help wash my hair!*

*Sing to the tune of Matchmaker. Yes, this is how I pass the time. I have multiple verses. 😉

This is day 8 of my husband’s cold. You might remember how paranoid I am of catching a cold or, god forbid, the flu. It has been exactly 2 years and 4 months since I had a cold and bronchitis (colds never stayed in my head ~ they always went to my chest) and I find myself grateful and, also, sad, knowing that a few months after that last cold my immune system turned on permanently. I read about other people with ME/CFS suffering with viruses and I knock on wood, cross my fingers, spit over my shoulder, pull on my earlobes and say toba toba to protect myself (yes, really. That’s not excessive, is it?)… But I also feel a stab of jealousy because that probably means their immune systems are healthier than mine ~ that they have calmed down enough to allow a virus to infiltrate the fortress.

That’s not to say I want to get sick. I don’t even want to test it. When my husband gets too close, I shoo him away. When I have to walk past him, I pull my shirt up over my nose. It’s comical, as if he horribly reeks. And I am an utter nag:

“Can you PLEASE cover your mouth when you cough?”
“Have you washed your hands?”
“Please don’t breathe near me. Just stop breathing.”

At least I say please.

He hasn’t taken a day off of work and, even on the weekend, he was in the garden, raking leaves and doing winter clean-up. I find myself fretting about him – not wanting him to push himself when he’s sick. This has probably been the most stressful year of his life because of my illness, plus he has had more landscaping work than many recent years and his job is all physical labour, out in the elements. I know I can’t implore him to spend a day on the couch, sipping Lemsip and chicken soup. It’s not in his nature. I’ve never seen him have a day like that. On Sunday, as he was in and out of the house doing chores, I said, “I really wish you’d rest.” He said, “This is resting.”

My husband could never get ME, though. That’s not in his nature, either. He sleeps well, never takes even a painkiller, he can eat and drink anything, can handle extreme weather… I’ve always had the sensitive system ~ I would love to have skiied in the winter, but hated the thought of cold and snow. I would have loved to lie on a beach all day in the summer, but have always wilted in the sun or become faint and headachy.

I’m convinced the main difference between us, though, is that he doesn’t care – in a good way. He isn’t a perfectionist, he doesn’t worry, he doesn’t feel guilty. I’ve always been an over-achiever. I want to do everything and I want to be the best at all of it. I’m turned into knots because there are tumbleweeds of dog hair all over the house and I haven’t sent thank you cards for the birthday gifts I received 6 months ago. I am guilty about my dog’s anxiety and sad that I don’t feel attractive anymore. I beat myself up about the sugar I can’t seem to kick and the money wasted on supplements that I couldn’t tolerate. I worry that I’m a bad friend and I’ll be forgotten and I haven’t made my mark on the world yet. My husband is happy to never socialise and doesn’t think twice about what people think of him and seems to always be perfectly content (not counting the last few years).

Yesterday, after he had worked, gone grocery shopping, gone to the pet store, picked up my prescriptions and cleaned the kitchen, I tentatively reminded him that the dogs need baths and my bedding needs to be washed and I’d really love help making my granola and detox soup (more on that later) and… if it is at all possible… we really need to hoover sometime…. I whispered this last one as I slunk out of the room and around the corner, out of eyesight (notice I still say “we” because I can’t bring myself to say, “You need to clean the house.”)

All this on top of his cold. Caregiving sucks. But I am lucky and very thankful to have one of the best caregivers and husbands out there.

Caretaker, caretaker, take care of me, stay by my side, help fight M.E.!

Cold War

I’m tempting fate talking about this, but it has been exactly two years since I have had bronchitis and/or a cold (they usually went together for me). I would say, in my old life, on average, I used to get a cold about once a year. I never paid much attention, though. As I’ve said before, it was never a big deal to get a cold and most restaurant employees would have to be on death’s door to miss a shift. I would joke that I might faint or go into anaphylactic shock or grow thyroid goiters, but I wouldn’t catch a cold.

Once I got sick with ME/CFS, I went through my medical records with a fine-toothed comb, hoping to find some clue to solve the mystery of my illness ~ that’s why I know the exact dates of my last cold. I had returned from Ireland a few weeks before (I think now, will that be the last time I am there?) and made an appointment with an allergist to ask about my eye and tongue swelling which had been going on during my visit home, plus a bad episode of pre-syncope. He had diagnosed me with autoimmune angioedema and urticaria by injecting my own plasma under my skin and watching a HUGE welt emerge. Great, I love being allergic to my own blood.

I then worked 11 days in a row and, as the weekend arrived, the bronchitis hit. It lasted two weeks and, although I finally went to the doctor, I didn’t take the antibiotics or steroids she gave me and I didn’t take any days off work. My father visited over the weekend that the infection was tapering off ~ we had a lovely time ~ and then I worked a few more weeks before flying to Virginia and getting sick with viral gastroenteritis that landed me in the ER, getting fluids. A few months later, the flu shot triggered this new life. No wonder that vaccination was the straw to break my immune system’s back! This is the message I want to get out: PAY ATTENTION TO YOUR BODY! HEED THE WARNINGS!

Anyway, there are very thin, very pale silver linings to my situation and I search for them daily, in an endless quest for gratitude and acceptance. This week I think, Two whole years without a cough or congestion or phlegm or wheezing! I try not to think, Yeah, but who cares when I’ve had endless flu for 21 of those months? I would prefer to be sick with bronchitis every day of the year than live with a disease that does not allow you TO EXPEND ENERGY. But I don’t go there. I know one day I will have to contend with a cold on top of ME and, until that day comes, I am going to be very, very grateful that my lungs and nasal cavities are clear.

Sunshine on my shoulders makes me happy

It’s like I flew to the Caribbean over night. I just sat in the sun for an hour, wearing only a tank top and shorts. I had to come inside in case I was in jeopardy of getting a sunburn. Sunburn?! A few days ago, it was snowing! And it is only meant to get hotter through the weekend. It definitely lifts my spirits. Although, you know how odd it is when you have a cold during the summer? That’s how I feel. I took my bad turn for the worse at the end of last summer, so it feels all wrong to be sick in the heat. Intense spring sun is meant to energize and bring a low hum of excitement and vibrancy. Instead, my head is full of cotton balls, my body is swollen, throat is scratchy and my muscles are extremely stiff. But, it’s warm out… focus on the positive!

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And, speaking of positive moments, I thought I should let you all know that I felt good yesterday. Yesiree, I said GOOD. I drove myself to an appointment that was only about ten minutes from my house. I stopped at a store and got lunch from the deli (this is the first time I have walked into any building but a clinic or hospital in months). I walked around the garden with my dogs. I stayed awake until 11pm and actually felt okay after 6pm ~ able to watch a movie, able to laugh.

There always has to be an unfortunately and, unfortunately, my night was quite tortured. I stopped wearing the cpap about a week ago as an experiment. My allergies flared up and I was too stuffy and inflamed in my sinuses to use the nasal masks (the alternative is a full-face mask, but mine is extremely bulky and wakes me up as I thrash around). My brain during sleep fascinates me. I would love to see an fMRI of the whole night. I would love to do a sleep study in my own bed and really see what happens from minute to minute. My brain is on fire. It is infected by unease. In the brief moments of waking ~ like surfacing periodically from quicksand ~ before the incubus’s long fingers push me down into unconsciousness again, I feel somehow crazed, like the mental version of wild-eyed. I am tensed against the cold or curled on the edge of the mattress, trying to avoid the heat. I am clawing my way out of nightmares that are always about running from whatever is trying to kill me or desperately needing a rescue, with no hope of help.

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If I had to objectively interpret what is going on beyond the obvious fear/loss of control dreaming, I would say perhaps I do need a prescription remedy to calm whatever chemicals are misfiring or maybe I am low on some neurotransmitters and, just like I take thyroid hormones everyday, I should be taking something to regulate brain chemicals… But that’s just it: they’re BRAIN chemicals. That’s scary. And it’s such a crap shoot. What Rx to choose?

So, I am at peace with my current stubborn obstinacy to sleep meds and maybe, if I ever take that step, I will wish that I had done it sooner, but I refuse to regret my choices.

As if to reinforce my thoughts, when I called the closest hearing aid store to inquire about custom-fitted earplugs, the lady that answered the phone told me she had taken half an Ambien and wound up in an ambulance to the ER, with doctors thinking she had had a stroke.

Anyway, I don’t know what the no-cpap experiment shows. I feel like I’m sleeping a little better and I think my Zeo graphs show slightly better sleep cycles, but I feel worse when I wake up and during the day. More tired and stiff and groggy and beaten up. Maybe it’s just allergies. My husband is watching tv with tissues shoved up his nose, so I know it’s definitely in the air.

let’s just take it slow in this home on ice

I’ve been cold my whole life and I I’ve never made any great effort to help my situation. Even now, at the age of 39, I have to remind myself that there are options and I’m a big girl – I can buy thicker socks and not keep wearing the ones I got from the dollar store 15 years ago. Like the aforementioned heated vest for the motorbike that my husband bought me. I told him I was going to return it — I probably wouldn’t wear it often enough to justify the cost. I not only wore it every day during the winter, I wore it in the summer, I wore it to the dog park, I wore it going out to eat, I wore it in the house, watching tv. I never, ever would have thought of purchasing something like that. I like thin, tight material, tshirts, layering. I’m short, so never wanted to bulk myself up. There’s a photo somewhere of me skiing as a teenager. I am wearing black jeans and a pretty light-weight jacket. I basically look like I could have been walking down the street in, say, the autumn. All the other we-ski-every-year types are wearing the puffy snow pants and fancy hats and goggles. I went to college in Wisconsin, but can’t remember wearing any shoes other than Vans and Adidas. No snow boots? Seriously? If I weren’t sick, always had warm feet, had endless money and didn’t have a skeleton to worry about, I would wear very high heels every day. I love being 5’5″. I love strutting and sashaying.

My best friend and I used to get dressed for school under the covers while still in bed. We’d dash across the room to grab any article of clothing that wasn’t within reach and dive back under the duvet, artfully swapping our sleepwear for our school clothes while lying down. There was never enough hot water in anyone’s house in Ireland for multiple people to bathe and you certainly wouldn’t luxuriate under a scalding shower for 15 minutes to get your core temperature up. We were both diagnosed with Raynaud’s, too. My Mother used to say “Che gelida manina!” whenever she took my hand. To this day, I relate cold hands with jellyfish because my childhood brain latched on to the “geli-” part.

I’ll never forget going to Edinburgh with my husband in the infancy of our relationship. I never made an effort to get good socks or invest in warm, practical boots or a proper winter coat or hat or gloves… I dressed the same way in winter and summer, I just took off a few layers. Walking around Edinburgh castle, my toes were bloodless greyish-white blocks of ice. We stopped every so often so he could put my feet under his shirt on his stomach, rubbing them gently in the hopes that they wouldn’t fall off. It was useless. Nothing can really bring back the blood except hot water. And then the blood pools in my feet until they’re hot and swollen and fit to explode.

A few years ago, I bought Uggs, not caring anymore that I’m 5 feet tall and they have no heel. I started wearing wooly tights under my jeans, remembering that’s what we used to do when we were kids. Then I bought a hat with fuzzy ear flaps because, if Frances McDormand could pull it off, so could I.

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And last week, I got my first heated blanket. Well, heated mattress pad. I only turn the heat on on one side so I can move to different areas of the bed depending on whether I am in fever or chill mode. My Mother has always had an electric blanket, I’m not sure why it took me so long to decide to get one. For Christmas, I want one of these:

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I am grateful for hot water and my bath tub.

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