December 22, 2014 by Elizabeth Milo

A Sudden Illness by Laura Hillenbrand

With the publication of the excellent article in the New York Times Magazine last week, The Unbreakable Laura Hillenbrand, I just noticed that trending stats on my blog show many searches for her harrowing and moving account of the onset of her ME (CFS in the article), A Sudden Illness. I also noticed that the links I posted a few years ago for that article, which was originally in The New Yorker, were no longer working (and you have to pay to access the archives). So, here is a .pdf file of her article: A_Sudden_Illness.

I really want to feed the public’s curiosity about her journey and this illness while the NY Times article is still featured on their site (currently in the Health section and #4 on the Most Emailed list). Please feel free to share this post so we can educate while people are curious around the marketing of the film, Unbroken.

After reading the NY Times article, a few things stuck with me: she separated from her husband, which is heartbreaking, yet, sadly, understandable; she can walk down a street, go up and down stairs, do yoga; she has gotten much better and had horrific relapses; she still suffers constant vertigo and hasn’t gone insane; she is taking “new drugs” (what new drugs??)… and some of the workarounds we have to do to accommodate this illness can lead to a richer experience.

Another thing that stayed with me: her first editor said, after 25 years, “the first draft of ‘Seabiscuit’ is still the best he has ever received.” Damn, imagine being that writer. Would be a dream come true for me to publish a book, let alone have it touch millions.

There have been other interviews with her, but I’ve never seen one as thorough as this one by Wil Hylton. Hillenbrand said on Facebook, “I am so moved and grateful. Thank you, Wil, and to everyone who was interviewed for the piece. I can’t express how stirred I am by this.”

The New Yorker listed A Sudden Illness as one of the top ten most requested articles from 1999 to 2009, which speaks to the legions of sufferers looking for any information and first-hand accounts of onset. I know I was and that article changed the way I viewed my illness — it was at once comforting and totally terrifying, it both inspired me and left me hopeless. Mostly, it was validating.

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I listened to Seabiscuit while driving my brother’s Isuzu Trooper from Knoxville, Tennessee to Durham, North Carolina to New York City. It was the first book I’d ever listened to on tape. I rented it from a Cracker Barrel (a restaurant chain, dotted along highways, that rents books from one location and allows you to return them to another) and it will always be inexorably linked to that road trip during an exhilarating summer. I’d had my first scary health incident a few weeks earlier — a two month headache that called for a lumbar puncture, which landed me in the emergency room the next morning with the worst pain I’ve ever experienced in my life. I wasn’t told to stay lying down after the procedure and my cerebral spinal fluid was seeping through the puncture wound that never healed. But, when I drove to New York soon after, I was a woman unleashed and vibrant, soaring with that new gratitude you can only get from a scary hospital visit. I had no schedule, no job, some money saved and Seabiscuit was my travel companion. We parted ways just as I was driving into Manhattan on a hot August night, wearing a skimpy sun dress and chunky sandals. All the windows were down and I was enveloped in those pungent NY smells and frenetic lights and noise: They fed me like life force. I had never heard of ME and I had no idea that one day, like the author of the book I just listened to, I would be housebound and forced to listen to books rather than read them… That evening, driving on the open road and then jumping out of the jeep to hug my best friend from college in the middle of the shimmering heat of Manhattan, might have been the most alive I’ve ever felt.

And then there’s Unbroken. If you’re one of the few I haven’t told to read it, I’m telling you now: Read it. Don’t go see the movie instead. Interestingly, while my husband was shopping in a Torrance, California Whole Foods the day before I went to see Dr. Chia and the first time leaving Seattle in two years, there was a public memorial service being held to celebrate Louis Zamperini’s life a few blocks away. Funny how things come back around like that.

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By the time he returned to check on me, I was sweating profusely and chills were running over me in waves. He took my hand and was horrified: it was gray and cold, and the veins had vanished. He spread blankets over me and tried to help me drink a glass of milk. I couldn’t sit up, so he cupped my head in his hand and tipped the milk into my mouth sideways. It ran down my cheek and pooled on the pillow. My teeth chattered so much that I couldn’t speak. Borden called an emergency room. The nurse thought that I was in shock and urged him to rush me in. But we were far from the hospital, and doctors had never been able to help. I was sure that being moved would kill me.

— From A Sudden Illness
I have been there so many times.

December 14, 2014 by Elizabeth Milo

On the edge of nobody’s empire.

As I came into consciousness this morning and rolled over, before I’d opened my eyes, I felt the room tip sideways and then slosh back again. I tried to look at my phone to see the time and my eyes wouldn’t track properly. Like marbles rolling uncontrolled, I couldn’t make my vision focus on one point. And, in an instant, the fear collapses in on me, crushing my lungs, sucking all the air and hope out of the room. I wonder if the vertigo is caused by the way I slept – something physical tweaked in my neck – or my new thyroid medication that I started yesterday, or did I do too much decorating the tree? Was it the drop of milk in my tea? I wonder how long it will last and does it signal another relapse. Having the borders of my world change from the downstairs sitting room to the four walls of my bedroom seems immeasurably cruel. Facebook is a lifeline normally, but torturous today. Christmas cheer, family fun, laughing faces, out and about doing things, going places, making new memories. One friend is going to a play in NYC, others are going ice skating in Glasgow, and a photo of a pumpkin spice latte sends me over the edge.

Every day, every hour, that my headache isn’t too bad or my brain isn’t too muddied and labouring, I focus on a future where I may be able to leave the house, interact with friends, have time elapse without a constant focus on my malfunctioning body and precarious health. But, as soon as there is a shift – my sleep disappears, my muscles are poisoned, this vertigo tilts the horizon away from me with the slightest movement and the room spins sickeningly even while still – despair eclipses everything. I feel like I’m buried alive, dragging my fingernails along the wooden coffin, screaming at the top of my lungs, while people deafly live and laugh six feet above.

This is where I was this morning when Jen Brea posted this song by Belle & Sebastian. I didn’t know the singer, Stuart Murdoch, had severe M.E. I needed this today.

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As I was about to publish this post, my two dogs just got past the gate to the upstairs and both bounded onto my carefully kept-clean bed with muddy boots from tearing around the garden, barking at the passers-by. It is the first time that they’ve been on my bed in three months and it felt like how it must be to have excited children, brimming with life-force, jump into your bed on Christmas morning, holding fistfuls of treats that crumble all over the sheets and wearing smiles of oblivious delight. Yes, their visit caused my world to teeter-totter even more violently, but it also lifted the heartache a little. This too shall pass.

December 13, 2014 by Elizabeth Milo

O Tannenbaum, O Tannenbaum.

A second addendum to my last post:

So, yes, we spent $20 on a voucher for a real Christmas tree and then $150 on an artificial tree that smelled up the whole room and then another $150 on another artificial tree that I accidentally ordered off Amazon, but, in the end, the $3.97 tomato cage is slender and beautiful, holds all our ornaments, and we’re so thrilled with it’s subtly, the lack of smell, watering, dropping needles, killing of trees and EASE of set up. Can’t believe we didn’t do this sooner and we’re never looking back.

December 11, 2014 by Elizabeth Milo

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.

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:

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:

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:

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! 🙂

December 6, 2014 by Elizabeth Milo

Doctors, Tests and Direction.

So, the MD that my husband and I have seen since 2007 has left her practice abruptly and I’m quite sad because we had a great relationship and mutual respect. She trusted me and would run tests that I requested if I had good reasons. She also knew me before I was sick and that was very important to me. She knew me when I was bouncing off the walls with energy and happy. She saw me a week before ME hit for a check up and I told her my only problem was sore muscles which I attributed to sitting at a desk after so many years walking the floors of restaurants. She witnessed the abrupt change in my abilities when all the other doctors I’ve seen have nothing to compare my current level of health to.

Now my two doctors are naturopaths: Dr. Erin and Dr. Kim. I had follow-ups with both of them in the last 10 days. Dr. Erin has put me on 25 mg of DHEA and progesterone. They’re topical, compounded only with coconut oil, nothing else. She’s hoping these will feed down both pathways to raise all the other hormones that are low.

And by “pathways”, I mean, instead of giving me just Pregnenolone (at the top of the “map”) and letting my body do with it what it wants, the DHEA and progesterone insure that (in theory) I’m feeding all branches of hormone production:

My thyroid hormones continue to be low, even though I almost doubled my dose a few months ago, so I’m changing to compounded T3 and T4. Dr. Erin doesn’t want me to try NDT (natural desiccated thyroid from pigs) because I’m so reactive right now, but she’s hoping compounded meds without the crappy gluten- and dairy-derived fillers will help me absorb the hormones better. I’m really nervous about the change because I’ve taken the same generic pills every morning for 6 years — well before I got sick.

My salivary cortisol test showed high levels throughout the whole day, especially at night. However, Dr. Erin said she thought functionally I was still low, her theory being that my body is compensating for something and that cortisol is either being converted to a less active form or receptors are down-regulated, which results in my body needing to produce more to get the same results. She also wants me to start humic acid (for chronic infections) and a homeopathic lotion to rub into my sternum which can supposedly desensitise my body and help reactivity. Not sure how much faith I have in homeopathy, but there’s no harm in it, other than the cost. I’ve also been told to start daily “hydrotherapy” (basically, hot and cold towels to boost immune function) and oiling my body to absorb additional fat (some serious old wives’ shit going on here).

Dr. Kim ran a bunch of blood tests. The good news is my CBC, metabolic panel, folate, iron and vitamin D are all within normal range (the latter two I would like to be higher). The bad news is, total immunoglobulin and all 4 subclasses are even lower than they were when Dr. Chia tested them. I also had high levels of Mycoplasma Pneumoniae IgG, HHV6 IgG (which I already knew) and she said I was “dripping in EBV.” Gross.

The final blow was candida is high. Those who know me, know I have dreaded the day I was tested for candida and purposely didn’t bring it up with the last 30 doctors because I don’t want to face my sugar addiction. Dr. Kim isn’t insisting I go on a strict no-sugar diet, god love her, because I think she recognises my need for the joy it provides and, really, I try to be responsible — a bit of dark chocolate, ice cream, some honey, jam, fruit, dates… It’s not like the good ol’ days where I could eat a Dairy Queen Blizzard or a whole purple Yorkie without thinking twice. She is putting me on a prescription anti-fungal, Nystatin, a pulsed dose — 4 days on, 3 days off.

I am waiting to hear from insurance about sub-cutaneous IgG (because I’m too scared to start with IVIG) and, in the meantime, I am starting to supplement copper, low dose B-complex, additional B6 and B1, increasing Thorne Trace Minerals to twice a day and magnesium glycinate to 4 times a day, as well as homemade electrolyte water all day long.

I’m hoping and praying that I will feel like a different person once my hormones and thyroid are balanced. Then my blood pressure will come up and my brain will work better, headaches will dissipate, my immune system will be able to suppress the infections, sleep will get better, reactions will fade, fatigue will lift and we’ll all live happily ever after!!

Rag and Bone Shop of the Heart

E.M. AND M.E. AND M.C.A.S.

Monthly Archives: December 2014