Oh, Christmas Tree. Oh, Christmas Tree…

We’ve always had a real Christmas tree; decorating it and wrapping presents to place under it has been half the joy of Christmas for me. A few weeks ago, I bought an Amazon Local deal: $20 for $40 to spend at a nearby Christmas tree lot and then I realised… we probably shouldn’t get a real tree this year. I am reacting to everything lately and I’ve been bothered by the small tree in my meditation room and the soil it sits in. Last Christmas was the lowest point in my ME journey so far and I’ve gone downhill since the summer, so I really don’t want to aggravate things by having a smelly, potentially moldy tree in the house for a month (most asthma and allergy sites I looked at recommended against a real tree). I even asked in my MCAD group and the vast majority of those that answered get a fake tree.

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So, we bought a fat 7.5′-tall artificial tree from my friend for $150. He said it was used once and kept in a back bedroom all year. My husband opened it up and we let it sit and air out on the porch for 5 days and then he moved furniture and broke his back bringing it inside, setting it up, and tweaking every branch and twig for an hour to make it full and beautiful. When I came through my vapour barrier from upstairs, before I’d even looked into the room and seen it was up, I knew the tree was there. It was like walking into a wall of smell. I couldn’t identify the smell. It wasn’t a plastic smell and it didn’t smell like dust or manufacturing stench, but it was a very large smell. I’d go into the kitchen to get something to eat and, as I walked back into the sitting room, I would stop short as I hit that fetor again. Over and over, the heaviness of it took me by surprise. My throat was burning, I got headachy… Normal issues for me, yes, but I felt like it was the tree. Or, at least, having those symptoms while being enveloped in that smell, correlated them in my brain. To add insult to injury, it is a really high quality, pre-lighted tree and the lights are SO INCREDIBLY BRIGHT in our small room, that it hurts both of our eyes and leaves spots in front of our vision. I thought bright lights were a selling point, but not in my world, of course. Central immune system sensitization is like an evil super power.

My husband, stony-faced, took it back outside while I apologised profusely for my fucked up body and my inability to do any of the heavy lifting. The guilt can be all-consuming.

I spent the next three hours shopping online for hypoallergenic artificial trees or green/healthy trees to no avail. Then I went on Ebay to look for metal trees and found these two for $100:

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Scentless (hopefully), washable… I started to get hopeful again that there could be something pretty to hang our ornaments on and create a festive feeling. I emailed them to my husband, bothered him at work to take off his rain gear (he’s a landscaper in Seattle) and look at the links (he hated the scroll one, but thought we might be able to do something with the spiral one)…

But then I found these metal trees on a different site:

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Twice as much, but maybe a good investment? I texted my husband again. There are no gold spiral ones left and only 2 black ones! We have to hurry to make a decision! Then I realised that they didn’t even guarantee Christmas delivery. So, best case scenario, we’d get it a few days before Christmas, which just doesn’t seem worth it when the whole pretty and festive lead-up to the day is what I enjoy (plus, it takes me weeks to decorate a tree with my energy level — a few ornaments a day) and, worst case scenario, it’d arrive after Christmas and be useless to us this year… and then probably go on sale in January.

I told my husband forget it, we’re shit out of luck.

Theeenn… I checked my emails. Somehow, while shopping for trees on my phone in my bed at 1am last night, my finger had hit “one click ordering” on Amazon (a really evil option that doesn’t bring you to a different screen to look at your shopping cart or confirm your selection, it just orders it — in “one click”) and we have an artificial “pencil” tree coming in the mail. I emailed the sellers because it said it hadn’t been sent yet: “Accidental order! Please cancel!” They answered that it couldn’t be cancelled and we’d have to pay to return it. To add insult to injury again, it’s not even on Amazon Prime and won’t get here until December 20th. And, of course, it’ll probably smell. And it’s made in China. So, we’re out $320 and our porch will be crowded with fake trees and, even if I manage to sell them on Craig’s List, my husband will be the one who has to deal with moving the trees, meeting the buyers etc. I honestly feel like I could take this all in stride, have fun getting creative and see the lighter side of this, except I’m just so guilty that my husband has to do all the work!

My new plan is this. I’m sure my landscaper hubby has a tall ladder:

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Addendum: Just as I was about to hit publish on this blog post, my husband called me and said, “I’m in Home Depot. The artificial trees are all $300+ and most have fake scented pine cones. I’m standing in front of the tomato cages. They’re 5′ tall and cost $3.97.” Hahaha! Hell yes! I had sent him this photo as a joke:

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We both laughed at the fact that we are going to have a wire tree that cost $3.97 and now I think this will actually be really ridiculous and fun. Happy Christmas! 🙂

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.

Going to California

After two years of being housebound, only leaving my house for doctors’ appointments, never going to a friend’s house, coffee shop, grocery store or cinema, never taking a drive to look at the ocean or waterfalls or mountains, my longest excursion being a 45-minute journey to a doctor out of town, I’m going to California to see Dr. Chia.

I made the appointment months ago after rereading No Poster Girl’s advice for the newly diagnosed. I’ve seen 40 healthcare providers in Washington and really, truly feel that the only substantial help they have been is ruling out brain tumours and cancer. Countless visits, horrendous amounts of money and unimaginable energy expenditure… all wasted, unfortunately. Although, my physical therapist has helped my pain but, alas, I must stop seeing him after Monday because my private health insurance coverage ends.

I based my decision to see Dr. Chia mostly on geographical proximity, assuming that we would have to drive wherever we went. His practice is in L.A. I also considered Dr. Peterson (Reno), Dr. Kogelnik (San Francisco) and Dr. Bateman (Salt Lake City). The latter would probably be my first choice, but it seems she really isn’t taking new patients. I battled between Dr. Kogelnik and Dr. Chia, but decided on Dr. Chia mainly because I knew more about him. I have followed my friend Patrick’s experience with Dr. Chia closely, have read Christine McLaughlan’s articles on Health Rising, and have watched all of the ME/CFS Alert video interviews with him.

In a nutshell, Dr. Chia is an infectious disease specialist who believes enteroviruses are at the heart (or gut) of ME/CFS. I will never forget reading Patrick’s account of his ME onset. He said he had surfed at a dirty beach, became ill a few days later, recovered and then got the Tdap immunization and, 5 days later, crashed with ME and never recovered. I swam in a lake in Virginia, came down with a GI illness a day or two later, recovered and then got the flu vaccination and, 11 days later, had acute-onset ME. We had such similar etiologies, although, I believe Patrick was otherwise healthy and, in my case, these came on top of a plethora of other issues such as working too much, never resting, lots of dental work, lots of traveling, bronchitis, vasovagal syncope, angioedema, anaphylaxis, unknown detox issues, IBS-C blah blah blah. But I knew the diarrheal hell was the penultimate cause and the flu vaccination was the shot that broke my immune system’s back. So to speak.

I was in such bad shape last December, I didn’t think there was any chance of my being able to keep this appointment. Five months flew by and my husband and I hadn’t discussed the logistics of the trip or renting an RV or whatever (I don’t even think he knew I had made an appointment), but, before I called to cancel (because, seriously, who goes to California to see a doctor for an hour?), I asked the good people of Phoenix Rising whether they thought I should do it. They were incredibly supportive and answered with an overwhelming YES! Uh oh. Really? But, at this stage, I’d have to fly. I assumed I’d never fly again. I don’t know what a flight would do to my symptoms, let alone the whole trip. So, I asked my family what they thought and they answered with an overwhelming yes and, not only that, but they all offered to help in so many ways: come with me on the trip, stay in my home to watch the dogs, research rentals, help with money, accompany me to the appointment, donate miles for a plane ticket etc. I was flooded with love and encouragement and, suddenly, for no other reason than I wanted to ride the wave of excitement, I decided to go. If not for Dr. Chia, for me. To know that I could leave this house. To create new memories — even hard-won ones — that aren’t these four walls, this bed, this garden. The truth is, I’m terrified and I know enough about Dr. Chia’s treatments to know that it may be a one-off visit and it will probably be a dead-end. But, I’m still going to do it. And I’m going to close my eyes everyday until my departure date and envision safe travels with stable blood pressure, steady legs, no vertigo, no headaches, comfortable body temperature, no chemical or food reactions, no collapsing or swelling or bowel issues, and good sleep. I’ll write more details in my next post.

Reblogged from THE-LABYRINTH: Now, Imagine How This Feels…

Now, Imagine How This Feels…

3 DECEMBER, 2013 BY  7 COMMENTS

Imagine that it’s Tuesday, the one day a week where I am lucky enough to attend an Advanced Nonfiction class at Victoria University (VU), and I’m psyched! I don’t have to worry about air-borne fragrances or solvent-based particles from spray deodorants or solvent-fragrance based hairsprays contaminating the classroom air. I don’t have to worry about having to leave the class due to symptoms bought on by breathing in fragrances that other students may have used. I don’t have to worry about the molecules of these toxins sticking to my hair and clothes, making me sicker later on. And I don’t have to worry about sitting in class while wearing my mask and not even knowing if there are solvent or fragrance chemicals emitting from other students into the air of the room (My sense of smell is virtually blindfolded by the 3M mask that I sometimes have to wear to protect my health… If it wasn’t impeding on the ability of my olfactory sense, then sure, I’d be able to breathe it in and smell it, thus warning myself, but not before getting chronically ill. Sometimes for days.).

Me wearing a 3M mask to protect my airways from chemicals

*What a Fashion Accessory*

(Just so we are clear, you know it’s breathing in these chemicals that cause symptoms, not the actual ‘smell’, yes? Of course you do! Silly me for even asking that. Next time, I’ll ask it rhetorically.)

Imagine being chemically sensitive to solvents, fragrance chemicals and the petrochemicals used as ingredients during the manufacture of designer fragrances, the el-cheapo imitations, and in popular deodorants (like Lynx, and Mum), and  getting to go into class each week, safe in the knowledge that (retrospectively) 94% of the time)) people will have made the effort to go free of these products? (Sure the air may smell of scents, due to shampoos, conditioners and roll-on deodorants; and it may even be floating with notes of patchouli and jasmine from products containing essential oils because in our requests to get people to go fragrance free it has been explicitly expressed that it’s preferable for them to use products that contain natural ingredients. I know this is not an ideal situation for some chemically sensitive people but for me, it totally was! An essential oil could never impact on my health in the same way as a spray on fragrance can.)

Fragrance: Designer or Fake; it's still Toxic

Fragrance: Designer or Fake; it’s still Toxic

Imagine that there is a notice in the Student Handbook explaining that some students are sensitive to chemicals and that there are some classes where people will be reminded to be ‘mindful’ of certain chemical-based products.

Imagine the teacher sending out an email the day before to remind the rest of the class to consider my need to breathe air unhindered? Sure, I could wear my mask for the whole class but as many chemically sensitive and immune compromised people know, there are a few problems with this: firstly, the lack of oxygen is not conducive to learning, thinking or contributing to discussion; secondly, there is the limited ability to show facial expressions, therefore, causing a hindrance in communication (not for everyone, a few people, mostly teachers, see past the mask and talk to me as if I am the same as everyone else); thirdly, and most importantly, it can be dangerous in that if there is a lot of fragrance in the room, it then gets on my hair, skin and clothes, and sometimes into the tear ducts of my eyes, but additional to that, if I sit in the room for the whole class, then leave and remove my mask, I become chronically ill due to solvents, petrochemicals and fragrance chemicals being all over me and in my airways. And lastly, what some of you may not know, and I’ve only just recently found this out from the Disability Discrimination Legal Service (DDLS) myself, is that wearing the mask is actually a forced impediment! I have a right to go to class and not wear a mask, just like everyone else. That’s on top of the law that states that it’s Indirect Discrimination to not be able to access the class (or any other area where people have equal access) due to air-borne fragrances.

Imagine the cleaning staff changing to using fragrance free products in the buildings that I use. (Perfume-free Library room and building 10.) And that they are doing this with the intention to change to using fragrance free products in the rest of the university when the other products run out. (Their theory behind this: the chance of fragrance free products impacting on other students health is almost none, the chance of fragrance chemicals impacting on more students health is higher.

Imagine they do the same with the hand soap in the toilets. (You see even if a student comes to school fragrance free, they won’t stay that way if they wash their hands in the bathroom unless the soap they use is fragrance free.)

(Note: Staff at VU have worked every corner of the boxing ring to accommodate and include me in the classes and lectures; and I’ve never had to use the ‘discrimination’ card to force them to fit me in. (I do know that they’ve injected the word ‘discrimination’ right into the main vein of bureaucracy via communications between various departments. All in the name of making shit happen! It’s like they know that I belong there. I really feel like that! Okay, there was this one teacher… but I’m not going to go there, today. This post is about being thankful!)

Imagine how I felt as I went to class, attending to my studies just like everyone else? At times I felt a tad guilty about the trouble people were going too. But do you know what I found? That speaking out about fragrance chemicals and their effects, gives others permission to do the same. No one wants to be a troublemaker. No one wants to complain—or seem to be complaining—about what products people use. No one wants to be seen to be different (for the wrong reasons).

Towards the middle of the last semester, a text went out asking people to be mindful about all staff and students who suffer health problems from these products. And it said that all classes are fragrance free!

I’ve already expressed how much I feel like I belong in this particular learning institution. So much, that I feel as if my experience and my illness have taught others; but more even more so, it’s taught me that that anxiety I feel in the pit of my stomach right before I speak up about the ‘fragrance issue’, that anxiety is a tool. A tool that I can tap into to help facilitate a positive outcome—for me, and/or for others. It could also be a tool that I use to run, hide, squirrel myself into isolation. But no, I use this ‘anxiety’ to spur me on…

Imagine going to class each week and finding that that anxiety has faded into the background. Sometimes mildly humming  back there, ready to remind me to remind people of the boundaries. Imagine it just hangs out on the peripheral of my attention, letting me focus on my studies, 100 percent.

Imagine going to class each week and finding—knowing that there is an air-purifier in the room that a teacher or security staff member has kindly, turned on an hour previously. Imagine that Victoria University Disability Services (VUDS) decide to put the air-purifier onto a timer, just to make sure it goes on at the right time.

Blue Air Purifier Supplied by VUDS

Blue Air Purifier Supplied by VUDS

Now, imagine they put a sign on the classroom door, reminding others that the room is fragrance free and that toxic chemicals contained in personal care products can and do cause and exacerbate symptoms in people who have asthma, chemical sensitivities and those who have immune disorders, and to please refrain from wearing them? Imagine they source that sign themselves, via the Allergy, Environmental Sensitivity and Support Research Association (AESSRA) website, printing and laminating it, placing it up around the building: in the main office and the two low-toxic classrooms.

The Classroom Door with Signs Attached

The Classroom Door with Signs Attached

Imagine that the Professional Writing and Editing Coordinator, along with my help, drafts up a bullet point list of reasons why students could refrain from wearing certain products; what happens to me if I breathe them in (in the short term) and what happens to me if I breathe them in (over the long term); what they could use instead; and of what benefit it would be to them and others if they could do that.

Imagine how validating that would feel…

Imagine VUDs loans out an iPad to me so that I can minimise my exposure to breathing in petrochemicals from the inks in books and on pages. Imagine the possibilities for utilising this as a learning tool? I can take photos of the notes on the board. And I can use it to photograph documents like class room handouts. This way I don’t have to air them later; or curse when the wind blows them away or they get rained on while out airing. OMG, and the books! And the newspapers I can read on it!!!

Imagine one of my amazing teachers goes to the trouble of putting printed material behind plastic for me?

I know, it’s probably a dream, yes?

No, it’s reality.

(And can I just point out that lately my health has been impacted less by printed ink? It’s been a few months since I opened the mail, breathing in ink fumes that are so toxic to my system that just the exposure to the petrochemicals wipes me out for the rest of the day. I still air my mail. Still take precautions. But I’m not suffering such intense symptoms with printed material. (Glossy magazines. Not so lucky. Massive headaches. Small steps, small steps… I’ll get out of here!)

Now, imagine that it’s the end of the last Semester and that I’m two subjects away from owning my Diploma in Professional Writing and Editing. Owning. My. Diploma. Me? Imagine the buzz radiating within. How awesome would that be?

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Now imagine that the weekly email that goes out to the students before classes no longer asks people to remember to accommodate me, Michellina van Loder. No, it asks that students to please refrain from wearing chemicals so VU can accommodate all the students who suffer with this problem…

Imagine that all the anxiety and fear that’s been eating away at me as I collaborate with people to get my needs met, imagine it’s all been worth it. Imagine that it gave others permission to speak up. Others who suffer asthma, headaches, allergies and many conditions that flare when the person is forced to breathe in fragrance chemicals for hours on end.

Imagine this, my reality…

You see for me, this is a really lucky thing, for I don’t have a great support network of friends and family who will go fragrance free for me. Some will go without it for a visit or two. But these people are never really fragrance free because using fragrance is a daily thing for them. It gets into every piece of clothing or furniture they own. It’s in their cars. It’s everywhere, so even when they try, it’s still a problem. (I’m grateful for the few who don’t wear it, won’t wear it.)

So this sense of belonging I feel when it comes to attending classes and being a part of VU, it’s an important and valid part of my identity: a student, a writer, a poet, a professional blogger. It’s all wrapped up, right there!

Fragrance is the opposite of a social lubricant; it’s an emollient that rusts away, seizing up all working parts until things are just fucked. And each time you have a discussion with someone who doesn’t want to go without wearing fragrance, the talking—however gentle the persuasion is—causes friction over time. And that there, the resistance, is the rusty beginning of a solid relationship turning into a wasteland of broken hearts and hurt feelings.

But it’s really great that I have this, and I’m so grateful to the staff and students at VU who are up to speed on this issue. Now, we just need the rest of the Australia to catch up!

All Aboard the Brain Pain Train!

It’s been about a month since I wrote a decent update. I’ve been trying to keep my readers entertained with short posts, NY Times articles, and reblogs of others’ writing because I have been in a sorry state ~ mostly because of crippling headaches. I think I’ve said it before: bad headaches are, to me, the number one most evil and debilitating symptom of this disease. I’ve written about them before here and here and here. Don’t get me wrong, PEM is by far the most disabling and cruel aspect of ME (I will write a rant about this one day), but, it is somewhat controllable… Muscle pain can be beyond everything you’ve ever imagined… I’m sure vertigo, if bad enough, would be as incapacitating as these headaches… The complete loss of life force when your mitochondria simply can’t keep up with the energy needs of your organs is more handicapping and terrifying… But, none of those, in my experience, blot out existence like the headaches.

Not only do the headaches affect me, but my family has to tip-toe around, talking softly, closing doors carefully, opening soda cans outside, watching tv with headphones, jumping up to distract the dogs when they bark. One of my neighbours had their hardwood floors sanded and varnished during the last few weeks and I stayed inside with doors and windows closed, griping about the fumes tearing at my brain. Another neighbour seems to have purchased the loudest weed-whacker available and insists on using it on the patch of grass closest to wherever I happen to be sitting, whether it’s in the front or the back of our garden. I texted my husband (who was nearby, but I can’t yell out with this headache and I always try not to get up needlessly because of ME): “There is a $100 bill in my bag. Please, please go give it to whathisname and bribe him to stop that noise. When I get better, I’ll do his yard work for the rest of my life. Can you die from noise?” My husband reminded me that we have the loudest dog on the planet and, so far, nobody has given us any grief. So, I kept the $100 (a birthday gift) and turned my attention to being grateful I don’t live next to the airport or a nightclub or a war.

headache

The headaches alternate between throbbing aches and all-encompassing migraines with blinding auras. They are always accompanied by extreme noise and light sensitivity and never able to be touched by medications. On a day like today, I am able to function, but, as the hours progress, I become more and more grumpy, silent, and still. My body tenses, brow furrows, and I stop being able to communicate. On middling days, I move very carefully, I can try to interact wearing earplugs and sunglasses, staying well away from phone and computer screens. And, on the worst days, I can’t leave bed, I can’t speak or see very well, I have ice packs on my neck and eyes, I pant, I sweat, I moan.

This current journey into headache hell started 22 days ago. The worst of it was a few weeks ago and caused me to stop taking all drugs and supplements in an effort to abort the pain. The multicolored, zigzag aura disappeared and the headache lifted enough to function, but, even today, it’s still a doozy. It is the first thing I noticed before opening my eyes this morning. Ugh, headache is still here.

I had quite a few theories. It started with my period, so I thought it was hormonal, but has continued too long. I started Nasonex about a week before the headache came, so I stopped that (and won’t try it again now that it is “tainted” in my mind), but I’m still suffering 2 weeks later. I thought it was from stopping Pantanase nasal spray after using it daily for a year, so I started that again. I thought it was from the new bottle of Chinese herbs (which looked and smelled vastly different from the previous bottle), but I stopped taking them for 4 days with no respite from the pain. I thought it was from overdoing it in general, so I rested a bit more ~ to no effect. I thought it was due to my chronically messed-up neck, so I used my traction device, my tens unit, tiger balm, hot pads, cold packs etc. Nothing. From sitting in the sun? No, it’s still here on cold days. From being on the computer? No, it’s still here on days that I’ve mostly avoided the computer. All the strawberries I’ve been eating lately? No, I haven’t eaten any in over a week. I refuse to believe there is no reason. I don’t want to take prophylactic migraine drugs. I just want it to go away. So I can continue to enjoy my exhausted, stiff, achy, fluey, brain-fog-filled summer days.

I have a lot of other stuff to report on, but it’ll have to wait. Apparently, it was far more important for me to get some company on this brain pain train. Thanks for joining me!