Plants that clean indoor air.

I just made this list for myself, so I thought I’d share.

Based on studies done by NASA  and others, these two plants filter the most chemicals from indoor air. They help rid your home of benzene, formaldehyde, trichloroethylene, xylene, toluene and ammonia:

Peace lily (Spathiphyllum‘ Mauna Loa’)
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Florist’s chrysanthemum (Chrysanthemum morifolium)
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These next three plants filter all of the above except ammonia:

English ivy (Hedera helix)
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Variegated snake plant, also called mother-in-law’s tongue (Sansevieria trifasciata‘ Laurentii’)
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Red-edged dracaena (Dracaena marginata)
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All of the above plants are toxic to dogs and cats. For nontoxic options, try Lilyturf (Liriope spicata) or Broadleaf lady palm (Rhapis excelsa), which filter formaldehyde, xylene, toluene and ammonia, or Barberton daisy (Gerbera jamesonii), which filters benzene, formaldehyde and trichloroethylene.

NASA recommends 1 potted plant per 100 square feet of indoor space. Here’s a 2009 TED talk on the subject. For more plant options, check out this table.

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March Update

I haven’t done an update in forever and it’s a shame because I look back on my updates a lot to see how I was in the past and compare it to how I am now. It looks like I’m at about the same level of functioning as I was at this time last year. A little worse, unfortunately. Last year, I was walking more steps, had been out in the garden more, was driving a bit (I drove to an appointment this week for the first time in forever, so there is some progress).

I’m still trying to regain some ground after the onslaught of nocturnal mast cell/viral/ME/inflammatory bowel reactions that started in September when I tried Cromolyn. Thanksgiving and Christmas were probably the two sickest nights of my life. As soon as I was resurfacing from Christmas, I got hit by another one on January 12th. As soon as I was feeling recovered from that, I had another one on January 28th and then again on the 31st. I stopped everything, including writing. For three weeks, I laid low and tried to reset my body. My constipation had become severe, so I had been taking massive doses of various different kinds of magnesium and I was afraid this was contributing to the episodes because there always seems to be some sort of bowel inflammation component involved (I get aches and what feels like electric pins and needles in my bowels and my flanks when I’m very constipated). When I quit magnesium, the constipation became critical — and a bit comical with the size of my protruding belly. I’m so uncomfortable, I wake up in the night when I roll over onto the poop baby inside of me. Where do the other organs go? I’m not sure how I continue to eat and I’m not sure why I continue to eat. You’d think at some stage I would just give my gut a break and eat liquid food, but I’m always hungry. I tried Triphala, Gentian, Medibulk, digestive enzymes, massage, enemas, prunes, oatmeal, even my old standby Wormwood stopped working. Which led me to the glycerine suppository on Oscar night which caused the (anaphylactic?) collapse on the bathroom floor. So, tonight I’ll be taking the generic polyethylene glycol (Miralax/Movical) that I have been avoiding because, if it’s too harsh, it’ll trigger a vasovagal reaction and I could pass out or, if it’s mild cramping, it’ll keep me up in the night. Not to mention it’s a nasty drug and probably made in China. But enough about that…

My father was visiting when the suppository episode happened and, a few days after he left, my mother came. That’s it from Christmas until now. That is my 2015. One quarter of a year summed up: reaction-recovery-reaction-recovery-reaction-recovery-reaction-recovery-visitor-visitor. Thank god for the visitors because the rest is really depressing. My friend M recently said that he fears not seeing those he loves ever again and, as we get older, that concern becomes more and more pressing. I think this all the time with my parents living so far away. Their visits allowed me to breathe easier. They filled me up with sustenance and gave me a little more mettle to carry on. I am incredibly lucky to have such a supportive and loving family. Recently, Jen Brea asked the ME community to post the most compassionate word or giving act ever received in relation to our illness (a very moving thread) and all I could think was, my family, my siblings, my parents, my best friends… their messages, words of encouragement, interest in learning about ME, physical help, monetary help, emotional help… Where would I be without them?

Both visits were wonderful and were needed more than I realised. My mother helped me with a hundred tasks I haven’t been able to accomplish and I got to hear all about my brothers and nieces and nephews, whom she had just visited. We managed to drive to the beach dog park twice: first, with my father and sister and, again, with my mother. It has been glorious weather in Seattle and getting out of the house is always the highlight of my months.

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Yay! Beach!

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Damn, he’s a fine looking dog. ❤

The one downside was, my husband wasn’t with us the first time, so I was without his deafening whistle and another set of eyes on our smaller dog, Riley, the escape artist. He ran around the rocks at the edge of the park and took off, causing me to expend more energy than I have in many months. I stood calling at the top of my lungs, over and over, “RILEY, COME!” and then started to panic when he didn’t reappear. At the top of my lungs and panic are not things that go well with ME. My voice is not strong, but, man, when my child went missing, nothing was going to stop me yelling for him. This is a dog that is only ours because he ran away from some other home and was found in a house barn, emaciated and unable to stand up. He’s an adventurer and curious about everything, while Bowie sticks to me like glue.

When Riley finally came into view, he was up in the car park and I sprinted up the sand embankment to the fence. Sprinted and up don’t happen in my world, either. Riley looked scared. He couldn’t tell where my voice was coming from and I was worried he’d run in front of a car or disappear, never to be found. He was tearing back and forth outside the park and I was calling over and over. He finally found me and I grabbed the scruff of his neck through the fence and sat down in the sand, waiting for rescue. My 72-year old Dad clambered up the rocks (cutting his shins in the process) and got Riley on a leash. I was half catatonic on the way home, like a rag with all the water twisted out of it. I crawled to bed, but, once again, bounced back quicker than I anticipated. And it was worth it. Mount Rainier on the drive home, through my glazed eyeballs, was spectacular. My Dad said it looked like a painting of Mount Fuji.

So, what else can I tell you about the last 3 or 4 months? I haven’t really taken any supplements this whole year so far. A few here and there, but, after every big episode, I would stop everything and go back to baseline. In the last week, I have been taking trace minerals, Vitamin D, K2 and fish oil again. I’m also still on topical DHEA and progesterone and just added topical pregnenolone and I’m about to add oral progesterone. It makes me nervous using bioidentical hormones, but they don’t seem to cause a reaction and both of my NDs recommend them, so I’m going with it. Apparently, there is evidence that DHEA+pregnenolone can reduce reactivity, so the goal is to take those for a while, then try IV fluids, then try sub-cutaneous IG and maybe even make my way to IVIG one day. I’ve been trying to get there since seeing Dr. Chia 7 months ago, so who knows how long it’ll take. I’m also still on the compounded thyroid hormones. All these compounded meds are costing me a fortune, though, and are not covered by insurance. One of these days, I’ll have to call this experiment quits and go back to my generic, dye-filled, filler-filled drugs. That’s it for what I’m taking. The Equilibrant, Nystatin, Hydroxyzine, Tramadol and Singulair are all languishing in the cupboard, unopened.

I had a few blood tests done in January. The big shock is that my cholesterol is sky high. Total cholesterol is 310, LDL is 194, Apo B is 124 (ideally <109) and LDL-P (particles) is 1755 (ideally <1000). There could be many reasons for this: my continuing low thyroid, my chronic and reactivated infections (coxsackie, HHV6, EBV, varicella, candida, mycoplasma pneumoniae), leaky gut and inflammation, genetics (both of my parents have high cholesterol) or something to do with my insulin/hypoglycemia issues. But, I actually think it is mostly to do with my diet. Over a year ago, I started an elimination diet for autoimmune conditions (AIP), plus cut out most high-histamine foods (fish, shellfish and avocado etc.). I cut out oats (I had already eliminated all other grains except rice), legumes, nuts and seeds, but continued to eat white rice (and rice cakes, rice pasta etc.). After about 4 months, I began eating a lot of ghee, butter and bone broth. I had my cholesterol checked in 2013 and it was fine, as it had been my whole life. In mid-2014, it had started to crawl up and, 9 months later, it’s now a pretty big problem. I’m pretty sure it was my inadvertent reduction in soluble and insoluble fiber (especially the former), plus the changes in the type of fat I was eating that caused the lipid problem.

Other January blood tests of note: low DHEA and testosterone (still), low insulin, high homocysteine (still) and my T3 and T4 are low (STILL). Don’t tell Dr. Erin, but I’m going to increase my liothyronine myself because these teeny incremental changes are just taking too long to fix my levels. Nothing seems to get better and more abnormalities keep emerging.

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I’m averaging about 1,400 steps a day and 6 hours sleep a night. When I do sleep, my sleep has been better. I just put it together now that this might be because of the progesterone supplementation, which is meant to help restful sleep. Wow, I finally made a correlation. I still can’t wear the CPAP without all hell breaking lose and the oral appliance still wrecks my jaw, but I’m managing to get a solid 5 hours most nights, with another 1-3 tossy turny hours. I have my third sleep study tomorrow to see if the OA is helping the apnea at all. My other sleep issues (pain, night terrors, constant movement and muscle spasms, awakenings post-REM sleep) are still unresolved since I haven’t been able to tolerate the drugs offered.

My headaches have also been a bit better, maybe because I backed off the salt ever so slightly. I get doozies a few times a week, but I noticed that I didn’t really have a headache the whole time my father was here. My salt loading wasn’t helping my blood pressure at all, so I might need to be medicated.

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My throat spot hasn’t been itchy in a while and I think the electric shocks in my left leg have been fewer and farther between.

I stopped using the Restasis after 4 months to see if I noticed any difference and I think my eyes have been worse since stopping, but I don’t know if they’re worse enough to justify a Rx.

Sore glands in my neck, crazy tinnitus, swollen sinuses are all continuous low-key issues lately. I started taking 5-6ml of liquid Zyrtec again a few weeks ago on a whim in case anything was seasonal allergy-related. As usual, I can’t really tell anything positive or negative.

My blood sugar seems better. This could be because I’ve diversified my diet (added back many nuts, seeds, oats, goat cheese, milk, potato, corn, chickpeas) and it also helps that my new endocrinologist explained that the danger lies more in how fast my blood sugar is dropping than how low it is. This was great to hear because I have experienced those sugar crashes where it can wind up in the 40s, but I was always nervous, if, when I was going to sleep, it was 73 or something, that it would continue to plummet in the night. She reassured me that, if I don’t feel the tell-tale shakes, it’s probably ok and I don’t need to eat. Having said all that, I got out of bed this morning needing to eat right away because I was shaky and it was 63, so it’s still a delicate dance. [<~ And, after I wrote that, I had a big blood sugar crash on my way out the door to PT because I didn’t eat meat for breakfast. I had to go back inside and cook a mound of lamb and a yuca cake and eat it in the car on the way there. I was 15 minutes late. I guess hypoglycemia isn’t really any better. Gah!]

My buzzy brain and neuro symptoms are definitely still here, always incapacitating when they hit, always signalling that I need to go to bed and power down. And I’m still stiff, inflexible, pulling muscles regularly, in some pain and pretty weak. My lower back has been a major issue recently and my husband bought me a back brace that I have to wear when I’m standing in the kitchen or I’m crippled.

My mood is fine unless I’m really sick or in a lot of pain and then I’m a scared, desperate caged animal, feeling like I can’t go on another minute. When I’m really sick in bed, feeling fluish, poisoned, inflamed and broken, the dark mental cloud descends and obliterates all hope and even the very rational thought that this will ease up. I don’t forget that it has eased up in the past – seemingly, it would be easy to reassure myself that it will again, but I can’t. It’s the knowledge that I couldn’t continue living if it didn’t ease up that causes the black blanket of fear.

But enough about that…

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The last time I was out on the scooter.

The bad news is, my scooter died at the end of December. It was my one lifeline to freedom and, although I only got out on it for about an hour each month, I lived for that hour. So, I have to figure out a way to get another. The best case scenario would be one that I could lift into my car myself. The cemetery is only a few blocks away and, ideally, I’d like to go for little outings without needing my husband and his truck, since he’s not home very much. I’m also thinking about the future when I have a smaller dog and will, I hope, have the strength to walk him on a leash using the scooter. Not sure there are any scooters that disassemble to light enough parts or that I would have the energy to put in the car, drive, take out and assemble, ride around for a bit, take apart and put back in the car, drive home, take out of the car again… Now that I see that in print, it seems a Herculean and impossible task. Plus, we can’t really afford one, anyway, when we spend more than we bring in every month. When we win the lotto, we can buy a scooter and a transport van that it can drive into. Or maybe I’ll just get better.

The good news is, everything is blooming and the smells in the garden are incredible. 🙂

This took me over a week to write, so apologies if it’s disjointed. Until next time… XO

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Dear Family

September 22

Dear family,

So here’s what’s happening. I had that terrible reaction to Cromolyn, but it continued for a few more nights than I would have expected. I’ve never felt so sick and urgently needed to change everything in case something —  anything — was contributing to this downfall. I was suddenly willing to take no meds or supplements, eat nothing, go bankrupt, leave the dogs, do anything to survive. I don’t know how to explain it. It didn’t feel like typical ME payback. It wasn’t my blood pressure or blood sugar or temperature, it wasn’t pain, it wasn’t my muscles… it was a feeling of system-wide poisoning. I realised it started the day after we got back from the coast (a dream come true, which I will blog about at another time), so I had to get out of my home, too, in case it was the cause. I wasn’t willing to stay one more night and risk being in the midst of whatever was poisoning me. It was that bad. It took me about one minute to make the decision. For two reasons: 1. If the house or the dogs were somehow making me sick, I had to leave immediately. 2. At the very least, I’m allergic to the dogs and getting away from them would help me heal and have one less assault on my immune system. Plus, Husband and I have talked about my staying somewhere else ad nauseum and always thought the first test would be in Seattle somewhere, it was just something that we hadn’t had the gumption to tackle yet.

My friend Erik, who has recovered through extreme mold avoidance, bullied encouraged me to not bring anything from my home — not my clothes, not a toothbrush, credit card, phone — in case mycotoxins were contributing/causing my illness and/or relapse. After arguing why I needed my own pillow, my sleep apnea oral appliance, my special food etc., I realised… No I don’t. My urine mycotoxin tests were high out of range. Eliminate all possible variables. Take nothing. Once I wrapped my head around it, it seemed like an obvious leap. I was leaving anyway, so why not go whole hog?

I found an AirBnB rental nearby that was able to have me check in last night. It’s not cheap, but it’s cheaper than a hotel and incredibly nice. It’s a brand new studio on top of a garage. New enough that I’m risking using their washer and dryer, but not so new that I’m overly concerned with all the Ikea cabinetry and new sofa and bed. It’s only available until Thursday, but it buys me some time to gain some strength and figure out what to do.

Husband, the selfless angel supporter, bought me a super-cheap tablet, so I could have email access, food, a few toiletries and a cheap outfit (leggings, sweatshirt). I stripped on the doorstep of the rental, left my clothes in a bag there and went straight in and showered. I have an emergency kit outside the door: epipens, benadryl, inhaler, blood sugar tester, glucose tabs, my phone and thyroid hormones.

Last night was rough. The sheets here are washed in smelly detergent which makes me sneeze and keeps me up at night (I know normal people don’t believe this, but, yes, the smell wakes me up over and over and makes me feel like I’m choking), so I’m going to wash the sheets and duvet cover today. Their pillows are for giants — prop your head at a 90 degree angle — so, I went pillowless and my neck is killing me today. I couldn’t get to sleep until after 2am and then I woke up constantly, of course  — I have no cpap, no mouth guard for grinding, no ear plugs, no eye shades, no melatonin, no magnesium, no dogs — but it was better than it has been.

I spent the whole morning cooking, but I’m still starving and worried about losing more weight. I have no meat and no broth — my staples. I’m scared to eat chocolate and chips in case they’re contributing to how awful I feel, and it feels like breaking a heroin addiction. It’s a ton of work, washing, chopping, cooking, cleaning for myself, plus showering standing up…

Thank you so much for your generosity and support, family. I’m so grateful to not have had to run to the streets or, worse, had no option to leave and no husband to help. I’m not sure what my next step is. Go from rental to rental until I know whether I can return to the house? Or sell everything and get out? I don’t know. I’m scared to test anything right now. The reactions/symptoms I was having were too deadly.

Love you all so much. Especially you, dear husband. You give so much every day. I am so sorry this is ruining your life and dreams as well as mine. We have had such a rough time, but I will fight for us and our little family with everything I have. Every ounce of energy and every penny.

September 23

I’m not doing well. I spent all of yesterday on my feet and moving, which is crazy, obviously, but I’ve been so much stronger recently and I don’t have my typical payback muscle pain, so I’m not recognising the warning.

Last night was horrific. Drenching sweats, heart palpitations, hard to breathe, shaking, feverish without the fever, terrible head, this is all stuff I haven’t felt since the first year and a half I was sick. I’m worried that it is viruses rearing up, like Dr. Chia describes, and a catastrophic (what if permanent??) crash and I didn’t heed the warnings and stay still because I didn’t have my typical crippling pain and stiffness. I’m worried that I brought this on myself because I got cocky and stopped my preemptive rests. I’m worried that I just made myself much worse with so much activity.

September 24

Dear family,

Yesterday, I had a major breakdown. I’m horrified that I may have made myself much, much worse by not getting in bed and staying there, not moving. But I can’t tell you the level of hardship this puts on Husband — and myself! To shoulder the guilt and to have no sense of control over your life. Preparing my own food and taking care of myself may be making me worse right now, but it helps me feel less like a burden. But I’m very, very scared that this is simply ME and, in trying to help myself, I’m walking right into a much more disabled state.

I’ve been averaging about 3 to 4 hours sleep every night this week. Today I need to figure out where I’m going tomorrow. Now that I’ve started this, I can’t go home yet. I’m far, far too sick to be anywhere that isn’t pristine, pet-less, easy to maneuver around… My system (immune, nervous, lymphatic, methylation) is too precarious to detox any assaults. Husband had to remove the scented garbage bags from the rental yesterday.

Worst of all — honestly, it feels worse than anything — is the sudden removal from my dogs’ lives. I can’t even type that without crying. They are my guardians and have become so sensitised to my every breath, noise and movement. The codependence isn’t too healthy, but they’ve kept me company and kept me sane all these years. At least with human children, you can try explaining. I just keep imagining their confusion, knowing they run into my room every morning to cuddle. We have a routine. They will be neglected because husband and I are tapped out and that, more than anything , breaks my heart.

September 25

Very sick. Some things are better from not being home, reinforcing our choice to do this. Please trust me. Love you all.xo

September 27

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September 28

My current rental didn’t work out (literally have slept an hour or two here and there for the last three nights) because it is so loud. The entire room shakes when vans/lorries/trucks go by and the person next door gets up at 4am and stomps around in what sounds like tap shoes on wooden floors next to the head of my bed. So, Z is coming from Vashon this morning to move me.

September 29

Dear family,

I know I need to rest more than anything. Trying to listen to my body is very difficult recently. The return of acute immune system-shifting symptoms has been terrifying and horrifically hard on my body. You’re all correct — I did too much that first day and made myself worse. But that wasn’t because I was isolated and alone or being heedless — I’ve truly been able to do all those things the past few months. I’ve been strong! So, I just misjudged the sudden drop off in my abilities and, like I said, didn’t have my typical warning signs to stop. It was a bad mistake. And so was working 50-hour weeks for 6.5 months after I got sick. And so was joining an exercise class and taking massive amounts of vitamin B12 all the other ridiculous things I’ve done that have made me worse over the years. It’s very hard to rest if you’re not physically maimed. Really. It goes against everything in my nature and I will always fail at it, it seems.

I think the hard part came when I spiralled further down after that first day and husband had to leave work to help me. And that was a double-blow because it came on the heals of his taking a week off of work for the coast trip. But, I’d never been in such a poor state. I may regret that he had to abandon a few days of work and we’re losing so much money (I already do!), but who cares about jobs and money when you’re writing an “if I die” email? Only hour-to-hour survival has been on my mind this week.

There are no words to describe the gratitude I feel that I have a family who cares, that there are people worrying about me and wanting to help. I never, ever take that for granted for a minute. I lost a lot of people the last few years and many people deal with this illness with nobody on their side, so I know how lucky I am that you care and want to help. So, thank you, THANK YOU for your thoughtful responses, empathy and for wanting to keep me safe. That, more than anything, is my overwhelming emotion: thankfulness that I’m not alone in this fight.

October 1

My current rental has mold in the washing machine, in the evenings the whole place smells like secondhand cigarette smoke from the landlords next door (I literally got wheezy — imagine all those years of working in the smokiest of smokey bars!) and the blankets on the bed smell so bad that I asked if I could get them laundered and the man said he had never had them washed before!! This all made me want to get the hell out, so I felt like I needed to give up and go home … I’m so tired… And Husband actually persuaded me to stay away (here or somewhere else). He wants more time to de-dog-ify the upstairs of our house, move out the furniture, bring the carpet to the cleaners etc. He thinks I should give this experiment a longer trial… I’d like to stay away until my night sickness and sweats totally abate because they are such an indicator of how bad I’m doing and then see how I do at home.

October 3

Dear family,

This new rental is great besides the moldy washing machine (again),  but, interestingly, I have a stuffy nose and the electric shivers in my leg came back the first day here — both for the first time since leaving home 10 days ago. Also, I have a new and different drugged feeling here and joint pain has not eased up. But, I’m still planning to stay a week and the good news is my sweats/shivers/shakes stopped (!!!) after 12 harrowing nights and I got some relief from the complete bowel freeze of the last week. I reintroduced a few things from my house (food, apnea device, supplements) with no adverse effects. Actually, the malarial nights went away 2 days after starting to wear my apnea device again, but they also started while I was wearing it, so there is no correlation.

Yesterday morning, my ND sent out an intern to do a house call to take blood and do a hydrotherapy “constitutional” in my own bed. I don’t care what you think about naturopaths, there are no MDs making free house calls and spending an hour, so I want to win the lotto and pour money into this clinic.

My testosterone, estrogens, DHEA, TSH, free T3 and free T4 are all out of range low. Sometimes I honestly think this whole illness is caused by my thyroid being dead. Grave’s disease is evil and most people who have gone through radioiodine ablation are on MUCH higher doses of hormones.

Fingers crossed this makes me feel a little better. X

October 7

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October 9

Dear family,

Ah, 6th rental is a charm. I kind of want to live here. The only downside is the bed is rock hard. I am so boney, have no muscle and have to deal with the fibromyalgia pain, so I really need plush bedding to not wake up in terrible pain. I’m force feeding myself. I get up, cook, eat, rest, cook, eat, rest, cook, eat, TV, sleep.

The first morning here, I woke up without a headache for the first time in a week, which confirms to me that something in the other rental was affecting me (and it started before I reintroduced Coconut Bliss ice cream and chocolate, so, thankfully, I have no good reason to continue to deprive myself of my sugar addiction ;)). I still have an achy headache, but it feels like it’s from a stiff neck and TMJ issues as opposed to a reaction to something. I increased my thyroid hormone and started a few supplements and low-dose Zyrtec. Feeling more stable.

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!

IV saline experiment… causes angioedema and histamine release.

I had a total meltdown yesterday. As my throat grew more swollen and I grew more alarmed, I finally put it together that I was experiencing an acute angioedema episode. I didn’t recognise what was going on because I usually get a swollen tongue and lips. On Friday, I chalked the edema up to fluid retention from the saline. The spot deep in my throat under my jaw that I mentioned in my last post always itches when I am having an allergic reaction – it’s the canary in the coalmine of my body – but I don’t pay attention to it as closely as I should. This was a slow cooking reaction: laboured breathing and swollen eyes, fingers and sinuses (stuffy nose) on Friday evening, itchy throat spot and heart skipping/arrhythmia started Saturday (both continue today, Tuesday), flushing/extreme overheating on Sunday, and throat closing on Monday, coupled with what felt like body edema – swollen bowel, abdomen, muscles…

Now I know throat closing/laryngeal swelling calls for me to use my Epipen, but, like I said, I didn’t cop on to what was happening until late in the game. Also, I would really have to be on death’s door to voluntarily inject myself with epinephrine. But I was very, very scared. Hence, the meltdown. I actually said to my husband, “Why can’t I just have a peanut allergy – something I can try to avoid?” I actually said, “Why can’t I JUST have M.E.?!” I don’t say those words lightly and, of course, if I could barter away my illnesses, ME would be the first one to go, but it is terrifying to feel like you have no control over anything and living with the threat of a fatal allergic reaction that can’t be identified is the ultimate loss of control.

I’m too tired to explain thoroughly and scientifically, but, basically, angioedema is the same mechanism in the body as urticaria, only in deeper tissues. If it happens in the tongue and throat and lungs, it can kill you. Often, as in my case, there are no identifiable triggers, so you just deal with it when it happens and hope it isn’t serious. It can present with urticaria or without and it can be as severe as anaphylaxis or very mild. If you want to learn more, Medscape has a very comprehensive set of articles (many tabs at the top with many pages per tab- just click on the next page at the bottom and you will go through them all). All of the better information on these types of conditions is relatively new. When I was diagnosed with idiopathic anaphylaxis 12 years ago, blood tests turned up no allergies, so the doctors washed their hands of me. That was it. When I suggested alcohol as a possible culprit, the doctor was disdainful and dismissive. When I mentioned that most times this happened was during my menstrual cycle, I was ignored. Here’s an Epipen, go away. Nobody knew about mast cell activation or histamine intolerance. And, of course, I was right! With my limited knowledge at the time of all things medical, I came up with the common denominators that made sense: booze, period, ibuprofen.

For an excellent article read this:
“The ingestion of histamine-rich food or of alcohol or drugs that release histamine or block DAO may provoke diarrhea, headache, rhinoconjunctival symptoms, asthma, hypotension, arrhythmia, urticaria, pruritus, flushing, and other conditions in patients with histamine intolerance.”

A few years ago, when I was diagnosed with autoimmune urticaria and angioedema and the doctor warned me (2 years too late) that people with this condition are more likely to have autoimmune thyroid disease, I asked him why the doctors years ago hadn’t looked into this autoimmune component. He said it was unknown then. He said it was something that only recently came to light. The only other thing he suggested was prophylactic treatment with Zyrtec, which I half-heartedly tried for a few months. No mention of H2 antihistamines or mast cell stabilizers. No mention of H3 or H4 or diamine oxidase. No discussion of mast cell activation, mastocytosis, histamine intolerance, low-histamine diet or any tests – whether reliable or not. No interest in looking into acquired angioedema, bradykinin-mediated angioedema or estrogen-dependent angioedema, all of which don’t respond to antihistamines. So, all of us – the patients – are scrambling along the edges of science. I feel like a surfer on an excruciatingly slow-moving wave. I come up with theories and do my own research and I see it mirrored in others’ blogs, but no doctors are accessible to help and no tests are robust enough to firmly diagnose.

For an excellent summary from another ME-afflicted blogger with mast cell problems (as well as EDS), read Jak’s blog: Mast Cells & Collagen Behaving Badly.

Which brings me back to my meltdown. For the most part it was a silent, immobile and tearless meltdown. I was simply frozen with fear. Saline probably caused a massive histamine release – right in the middle of my low-histamine diet experiment. I brought this situation on myself by requesting the saline. I had a reaction to an innocuous substance that is used to treat allergic reactions! Just like I had reactions to the antihistamines that are used to treat allergic reactions.

I can’t live with ME and angioedema and histamine/mast cell issues and sleep apnea and thyroid disease and crippling periods and a headache that never goes away and reactions to so many drugs!!

Fear of my throat closing more while I slept, fear of sleeping without my CPAP, fear of being woken up constantly by my CPAP, fear of taking an antihistamine, fear of not taking an antihistamine, fear of eating things that cause inflammation or histamine release, fear of losing more weight, fear of being on the pill, fear of having to weather my periods off the pill, fear of living the rest of my life in pain, fear of being in so much pain I have no choice but to take painkillers. What if I break a bone? What if I’m in a car accident? And then, swiftly on the heals of that thought, the fear that sent me into a tailspin: What if I have to go to the hospital? IV saline… IV painkillers… IV Benadryl… Contrast dye… Anesthesia… Surgery… What do I do when I’m older and I can’t avoid some procedure? When I break an already-osteoarthritic hip? What do I do if my body reacts to everything? I’m dead.

Fear of dying. Fear of living in this fear.

My answer to all of it was to throw caution to the wind and eat a bunch of forbidden histamine foods.

This is a perfect segue into part II of my diet post. I realise you are all on tenterhooks waiting to read it, but not yet, not yet.

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The most recent article describing IA (idiopathic anaphylaxis), written by Karen Hsu Blatman and Leslie C. Grammer, explains the distinction this way:

Patients with IA-A experience urticaria or angioedema with upper airway compromise such as laryngeal edema, severe pharyngeal edema or massive tongue swelling without other signs of systemic anaphylaxis. Patients with IA-G suffer from urticaria or angioedema with bronchospasm, hypotension, syncope, or gastrointestinal symptoms with or without upper airway compromise. Reference.

Yes, I’ve used steroids.

Every time I try a new drug, I first get ready for the hospital. I have lived under the specter of anaphylaxis for 13 years and, in the last 2 years, the knowledge that many drugs – even ones I have taken often – can crush my lungs and shut down my airways. There’s also the fact that my autoimmune urticaria and angioedema manifests itself as tongue swelling. My allergist said, “Some people get hives, some people get puffy faces, unfortunately for you, your tongue swells and that can be life threatening.”

So, today, before spraying a new powdered corticosteroid up my nose, I ate something, drank a lot of water, locked the back door, made sure the dogs were inside, took off my pjs and put on black yoga pants and a sweatshirt (this is “dressed” in my world). I also put my phone by my purse and made sure my husband was reachable.

But let me back up. I saw an ENT doctor on Tuesday. I made an appointment on Monday with the only doctor near my house that had an opening. I really liked his bio on the hospital website, too, and I wasn’t disappointed – he was very nice and thorough. I drove myself, which was fine, but his office was down a very long hall and I was once again confronted with how hard it is to navigate the world as a disabled person. I walked that hall, but what if I couldn’t? What if eventually I can’t? You need a strong, able-bodied caregiver, a wheelchair and much more time.

I haven’t been using my CPAP for about a month (which wreaks havoc on my sleep and health) because my sinuses have been too swollen. A few weeks ago, I decided to try irrigating them with a saline solution, since everyone swears by this (I used the squeeze bottle instead of the neti pot). I felt water in my ears and it came out my mouth and eye (seriously!), as well as the other nostril. It was thoroughly unpleasant, but I persevered twice more – until the water in my ears was bad enough to stop my insisting it was healthy. Over the next week it grew more and more uncomfortable and I was forced to make the appointment after pain radiated into my eye socket and cheek and jaw bones.

The ENT doctor looked in my ears (no infection) and rummaged in my mouth and pressed on my jaw (TMJ problems, which I knew) and asked if he could spray a decongestant plus lidocaine in my nose. I explained my sensitivity to drugs and asked him if the outcome would change his course of treatment and he said probably not, but he’d like to scope my sinuses. I told him, Bring it on! We don’t need no stinkin’ lidocaine! One side was easy, the other was much more swollen and his wee camera had a tough time getting around the corners. At one point, I thought he might puncture my eyeball. That wasn’t too fun.

He offered a five day course of prednisone, which I declined and he offered to inject my sinuses with steroid, which I declined. He said the swelling seems to be allergy-related and said I should try different steroid sprays until I find one that doesn’t give me migraines and, if none of them worked, we could consider other options. So, off I went with 4 samples to research and worry about. I eliminated the steroid + antihistamine because there seemed to be a tendency to lose one’s sense of taste, I eliminated the spray with the highest incidence of headaches in the clinical trials and my final pick was based on user reviews. Of course steroid warnings are scary for someone like me: you can catch things easier because your immune system is suppressed; don’t take if you have adrenal insufficiency; it can make viral/bacterial/parasitic/fungal infections worse; tell your doctor if you’ve never had chicken pox or measles (I’ve had neither)… And then, of course, it can cause nose bleeds, holes in the septum, headaches, allergic reactions and anaphylaxis. Joy.

A few minutes ago, I sprayed Zetonna up my nose. Because it is a metered spray, I can’t try a small dose like I normally would. I use what the rest of the population uses: one spray up each nostril, once a day. At least with my antihistamine nasal spray, I only took one spray once a day when the adult dose was two sprays twice a day. So, I wait and hope that I have no instant hives or swelling, no trouble breathing in an hour or two, no rash tomorrow, no migraine in a week, and no virus or bronchitis in the months to come. Oh, and that it actually works and the swelling goes down and I can sleep and breathe properly again. Wish me luck.

Gratitude for the day: I got to see my big brother yesterday, who was here on a layover (he’s a pilot). I was shaky, hoarse, headachy, exhausted and couldn’t do much but recline on the couch while we visited for a few hours, but that was enough to raise my spirits and calm down my crazy, agitated, insomniac nervous system. Love you, bro!!

Doctor follow-up: symptoms, sleep, diet.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My beautiful niece sent me this card. :)

My beautiful niece sent me this card. 🙂