July 3, 2014 by Elizabeth Milo

Another Day In The Life

This illness takes away every bit of independence and control. My day today was ludicrous and stressful. In my mind, it is filmed in high-speed to the Benny Hill Show music.

I made three back-to-back appointments (ophthalmologist, therapy and blood draw), which is obviously foolhardy, but, if my husband is going to come home to ferry me around, I want to maximise the time. However, I didn’t want the day to be longer than it needed to be because it takes such a toll on me, so I tried to schedule the appointments as close together as possible. The ophthalmologist’s office assured me 3 separate times (because I rescheduled 3 times and asked each time) that a 2:20pm appointment would have me out by 3pm because the doctor is exceedingly timely and expeditious. I google mapped the distances between clinics and called LabCorp to ask about parking and the name of the building and what floor they were on so I was completely prepared and wouldn’t be wasting time wandering.

But, first on the schedule this morning, our cleaning lady (a luxury we obviously can’t afford, but we decided we needed once in a while to alleviate the burden on my husband) was meant to arrive at 9am. That’s very early for me, so I had scheduled the day yesterday to do nothing but organise the house in short bursts (because you actually have to tidy the house for the cleaning lady): putting away clothes and paperwork, moving blankets, yoga mats and dog beds etc. with rests in between. It takes an extraordinary amount of energy for me to do this, mainly because it involves walking things from one room to the next and up and down stairs.

Our cleaning lady is scared of the dogs, so I locked them in my bedroom with me this morning and listened to them whine to get out for an hour and a half before I texted her. I got no answer until noon, when she said she would be here at 1:30pm. She wasn’t. And my husband wasn’t home by 2 to take me to my appointments, so I stood by the door, having eaten, showered, dressed and meditated, holding my handbag, unsure of what to do. He arrived shortly after, not too late, just late enough that I was anxious. We got the dogs’ leashes on (because we had to take them with us because we couldn’t leave them home with the cleaning lady) and I hid the key for her so she could get in while we were gone.

We drove like a bat out of hell, but traffic was worse than normal. Not terrible, just bad enough to make me anxious. I got there on time, but I was still sitting in the waiting room 35 minutes later, so I had to reschedule. They said I could come back after therapy at 4pm, but the blood draw was at 4:15, so I had to reschedule that, too– to 5pm, their latest slot.

On the short drive to the therapist’s office, I was starving, as usual, so I quickly ate an apple and a bunch of plantain chips. Then I had to stand in line at reception for a full 10 minutes (exhausting) and then sat in the waiting room for another 10 minutes, wishing I had taken my time eating rather than inhaling without chewing. By the time my therapist came to get me, it was 3:15pm — not too late, just late enough to make me anxious about the appointment going over time and thus causing me to be late for my rescheduled ophthalmology visit.

I was close to tears from watching the time tick by, the stress of the day, rushing around, not being able to drive myself, being let down by cleaning lady, husband, receptionist, late doctor #1 and #2, having to schedule these appointments in the first place, having to schedule them close together because I can’t handle long outings, having to reschedule 2 out of 3 of them, trusting the ophthalmologist clinic that said 40 minutes would be enough time when I know better… so, I spent 3/4 of my therapy session ranting about the day and how frustrating it is to have no independence… and then ranting about how the day’s events were impinging on my precious therapy time! I have shrinking to do, dammit.

Of course, therapy ran late, so we drove like a bat out of hell again to the ophthalmologist, got there at 4:10 aaannnd… at 4:50pm, I was still waiting in the waiting room. Of course. So I had to call the lab and completely cancel the blood draw. What a farce!

The good news is, the different pressures in my eyes seem to have resolved, so I’m no longer considered a glaucoma suspect. The doctor wants me to try Restasis for the next 6+ months, plus steroid eye drops to address the ongoing dry eye/blepharitis/lid muscle spasms/styes/grittiness/goopiness/floaters/blury vision. Yay, more prescriptions and protocols!

Through all of this, my long-suffering husband and dogs waited in the car, but, the other good news is, he took them to the park while I was in therapy and we got to come home to a beautiful, clean home.

And then I got to do this:

Aaaahhhhh…. take me away…. 🙂

June 20, 2014 by Elizabeth Milo

The Locations Effect*

Here’s the thing. I don’t think it’s coincidence that it has been so humid in Seattle this month and I have gone downhill. I have been using the dehumidifier every day and I didn’t have to turn it on once in the last six months. This is something I am so reluctant to write about because it causes me such terror and grief. More for my husband than myself. If this climate, this city, this house is making me sick, I would move. I could make that decision today. When you lose your career and your social life, become housebound and fear death, there is nothing that seems too drastic or impossible. I’ve been too sick to go anywhere, see people, call family, read books, so what do I care if I have to leave the place I have called home for 19 years? Well, I do care, of course. I have been too immobilized by fear all this time to even consider it, let alone talk about it, let alone do it!

But, the most difficult part for me is that the hardship falls on my husband. He is the one that would have to sell things, pack things, clean things. He is the one with hard-won seasonal landscaping clients. He is the one that has poured his heart and soul into this home, tearing down walls and building bathrooms, replacing piping and electrical, building porches, patios, vegetable beds and fences, tearing out the furnace and installing under-floor heating, slugging through the crawlspace and sweating around the attic, replacing every shred of insulation that was infested by rats when we first moved in.

He is the one that has spent 8 long years growing this garden oasis. Every single day that he doesn’t work — summer or winter — he has been in the garden doing whatever it is that people who love landscaping and plants do. The trees he has planted are glorious and you all know the fireworks show of flowers that I have documented here.

He has done work-trade for plants and materials, used reclaimed stones and bricks to build paths and retaining walls… he has mulched and pruned and dug and mowed every day for 8 years and, until recently, I could never see the art that he knew would reveal itself. While I was confused by his choices, he could see the future colourful landscape and, one day, there it was… Ooohhh, that’s why you cut back that hedge so aggressively! Ooohh, all that green actually blooms eventually! That’s why you put that tree there! There was a reason for every brush stroke, only it took years to see the full painting. And we thought we’d have forever to enjoy it. My heart aches for him more than anything — that he might have to walk away from his slowly-created and lovingly-tended artwork.

I know how lucky I am. I know I’m lucky to have a husband who takes care of me. I know I’m lucky to have had this home and to have had some savings. I know I’m lucky to have possessions in the first place to be able to sell. I could have started off from a much less stable position, without family support. But it doesn’t make it any easier. I don’t want to leave this house. My husband and I said our vows in the back garden. But, it is an inevitability because of loss of income. Leaving Seattle entirely is a different matter.

I have never taken Seattle for granted. Every year I am grateful that I don’t live with crushing heat and air conditioning… we don’t have freezing storms, frozen pipes, snow drifts, hurricanes or tornadoes…. don’t have to worry about mosquitoes, biting bugs, fire ants, huge spiders… I love all our doors and windows open 5 months a year and never having to think about insect repellent or ticks or West Nile virus…. I love the mountains and Puget Sound, the abundance of good food, farmers’ markets, clean water… I love the laidbackness and the passion of the people here… the music, art and theatre here… the politics, universities, the companies that make their homes here… I don’t want to live anywhere else in America…. But… what if?

Recently, Jen Brea, who is making the film Canary in a Coalmine, had some remission of her symptoms in Utah. I looked up today’s temperature and humidity in Salt Lake City and it is 88 degrees and 24% humidity. Here in Seattle, it is 61 degrees and 63%. Dublin, Ireland is about the same. My whole life I have lived in this climate and I need to test something different. I want to not only test a different house, but different air. If I could, I would travel to the Carribean or Europe, but the reality is, if I can be healthier in, say, Winnemucca Nevada, shouldn’t I go there? Can I separate living from all the things I thought equaled living? If I have no friends, no dogs, no home, no job, no possessions, but I’m not (as) sick, is it worth it? If I’m healthier, but I have no access to community because I’m living so remotely, can I be happy?

I can’t even begin to describe the lives of extreme mold avoiders. I have delved into that world for about six months now — watching videos, reading blogs and articles, listening to discussions in Facebook groups — it is harrowing and heartbreaking. No one can comprehend the pared-down, nomadic lives that people lead, leaving everything and everyone behind to travel the country looking for a safe place to sleep, their few possessions in garbage bags. Putting down shallow roots until something goes wrong — water intrusion, insecticide spraying, air quality changes — and then having to move on again to the next motel, campsite or friend’s driveway. I don’t know how they find the strength. But, my first step has to be getting out of here and testing how I do somewhere else. Part of me is hopeful and excited that it might make a difference and part of me thinks our little family will never survive such upheaval and I’ll somehow have to go it alone. As it stands now, I have to figure out where to go, when to go and who will take care of me until I can take care of myself. Gratitude pours from every fiber of my being for those of you that have offered to travel with me and help this quest: friends, siblings, parents and dear husband, I wouldn’t have a chance without you.

*The Locations Effect is the name of an online forum and Facebook group started by Lisa Petrison to report “on places where people have experienced improvement in chronic neuroimmune health conditions.” She is also executive director of Paradigm Change, a “not-for-profit organization with a primary goal of encouraging the exploration of the hypothesis that certain diseases involving the neurological and immune systems may be ones of toxicity.”

February 14, 2014 by Elizabeth Milo

My Funny Valentine

As a Valentine’s Day present to my husband, I decided to get marginally dressed again. I put on a bra and a red dress. Unfortunately, the dress, although clean, hadn’t been worn in a while and it smelled musty, so I switched to a pink sweater (pink and red are really living on the cutting edge of colour for me; they scream: I’m dressed up! I’m making an effort! ~ 90% of my wardrobe is black and grey) and leggings that have pockets and corduroy-type ribbing, so they give the impression that they are more civilised than mere cotton leggings. And I put on my new boots. I won’t take a picture every time I put boots on, I swear, but I never thought there would be a pair of flat boots that I liked and, more importantly, were proportional to my munchkin frame.

Unfortunately, after two changes of clothes, my battery is almost dead and I’m dizzy and incredibly drained. I woke up feeling okay, excited that I wasn’t feeling evilly ill, but how dare I pull on leggings that take a bit more effort than PJs and bend down to put on boots rather than slip my feet into slippers? It was too much and it’s only 11am. I know I will be wiped out when my husband gets home.

The entire plan was: get dressed, brush hair and maybe put on make-up. Although, all my make-up is 2+ years old and putting it on means holding my arms up in front of my face, which is a lot of energy, and it also means having to take it off. Exhausting. I wracked my brain to think if there was something I could do to surprise him. Cook dinner? No way. Clean the house ~ or even just the sitting room? Nope. Buy a present? Too late to do it online and I wouldn’t know what to get, anyway. And we’re trying to conserve our savings. So, I think my present is going to be yet another card thanking him for saving my life every day (because, make no mistake, I would be in a very different predicament without him) and wearing clothes that kind of fit me.

The funny thing about my husband is, he would never notice what I’m wearing. I could be sitting on the couch in a ball gown and he wouldn’t bat an eye. I kind of love that about him. I certainly never have to feel self-conscious about looking slovenly. He tells me I’m beautiful even on my sickest days. Love is blind.

One of the most distressing symptoms over the last year is hair loss. Never could I have predicted that I would be upset about my hair. I don’t really like hair. I’ve always preferred men with shaved heads and, half the time when I’m talking to people, I’m thinking about how much I want to tuck their hair behind their ears or put their hair in a ponytail. I find it distracting (and kind of gross) that every woman on tv has what I call “hair curtains”. Long waves down the sides of their face that are pulled forward so they have this weird part in the back of their head and no hair down their back.

Hair curtains.

Weird back of head.

So, what do I care if I have less hair? Well, my hair loss makes me look even more sickly because it is concentrated in the front and on top. You can see my scalp too much and there are clumps of short hairs that are either breaking off or just won’t grow any longer. I was on a Facebook group and someone mentioned that, because she was in the military and constantly wore her hair in a bun, she was going bald on the top of her head, so she cut her hair short. Light bulb! I’ve worn my hair up every day for the last 17 months that I’ve been housebound. So, I’m cutting it short. I’ve had my hair very short before, so it’s not a big deal, but I do have a few concerns: 1) I can’t dye my hair now, so there is a lot of grey. I’m not sure how I’ll like short greying hair. 2) I can’t wash my hair very often and, when it’s dirty, it’s nice to be able to put on a hat and still have the illusion of clean from the long hair coming out below the hat. 3) You can put long hair up in such a way that it gives the illusion of being more “dressed up”. But none of these things will sway me because I have to wear a CPAP! The headgear on a CPAP mask is hell with long hair and is undoubtedly contributing to the hair loss.

My sister’s hair stylist is going to make a house call, bless her heart. I wish I had longer, lovelier hair and I could donate it like Marie did, but I just don’t have the patience to grow it. The point of all this is to say that I guarantee my husband doesn’t even notice when I cut my hair. I have left the house with long blond hair and come back with a dark brown bob and, even when prompted, he couldn’t figure out what was different. When he met me, my hair was very short and fiery red. He’s pretty much seen it all. Luckily, days before I met him he had shaved off his long hippy hair. I sometimes wonder if I would have fallen for him if he had a ponytail. Probably. Love is blind.

Happy Valentine’s Day.

1998

Title Credit

January 1, 2014 by Elizabeth Milo

January 1st, 2014

This day last year, I said 2012 was the worst year of my life. I also stated emphatically that 2013 would look very different. And it did. But not in a good way. In 2012, I was still working for 5 months of the year. I got to spend 11 days with my soul sister, E., when she visited from Dublin. I was able to run errands, go to the dog park, talk on the phone, and see friends for 9 months of 2012. Unfortunately, that all went away. Now, I can safely say 2013 was the worst year of my life.

The details are too difficult and depressing to describe or dwell on, but neither will I paint a silver lining around this dark life. It has been unspeakably difficult, what didn’t kill me did not make me stronger, and I’m not grateful for the lessons I have learned since being sick. I am a sadder, scared-er, weaker, lonelier person and I’d give anything to go back to the ignorance and energy of healthier days.

However, I am much more aware of things I used to take for granted and I am more thankful than I’ve ever been: For every bird, tree, and arc of sunshine. For every single dollar that I saved before the abrupt halt of income. For every time a snort of laughter escapes me; every day that my legs hold me; and every book, film, song that distracts me. For every time someone vents to me about their life or asks for my opinion or feels they can use my muscle-wasted shoulder to cry on. For every time someone braves the thin ice of chronic illness to ask what life is like for us or see how I am feeling or offer to help, knowing full well they risk breaking through to the deep despair beneath.

Most of all, I am thankful for my family. My father, mother, brothers, sister, in-laws, friends, husband and dogs. (Oh, husband and dogs! I am alive today because of you! And I fight for tomorrow because of you.) Each day that they are healthy brings me solace and I experience stark, unfettered joy at every festive Facebook photo of holiday parties, restaurant dinners and energy-filled activities. So, keep singing, fishing, working, exercising and traveling, everyone! And I will live vicariously… Just, please, promise me that you do it with an eyes-wide-open acknowledgement of how short and fragile our journey is on this earth.

Here is my 2013 wrap up:

January: Was sorely disappointed at the Chronic Fatigue Clinic; saw first private doctor, tried cranio-sacral therapy.
February: Not much except stool and saliva tests.
March: Was sorely disappointed at second rheumatologist visit; saw second sleep doctor; had the 4 best days between September, 2012 and now; Zyrtec trial.
April: Got teeth cleaned; started seeing wonderful physical therapist; started the awful process of getting an oral appliance for sleep apnea which still hasn’t happened, almost 9 months later; Seriphos trial; started Chinese herbs.
May: New nephew R. was born; saw dermatologist; phophatidylserine trial; Nasonex trial; tried Tizanidine; turned 40; dear friend E.S. died far too young.
June: My mother and D. visited; saw cardiologist; tried valarian; started Unisom; Gabapentin trial; added rice back to my diet.
July: My father visited; stopped weekly therapy; stopped phone calls for the most part; stopped Chinese herbs.
August: Stopped eating soy, citrus; added lentils, garbanzo beans; tried Trazodone; stopped all vitamins and supplements; J. and Z. gave me a scooter: my ticket to some freedom.
September: My mother and brother, T. visited; abdominal pain started; husband’s family visited; celebrated 15th anniversary.
October: Brother A. visited; saw ENT doctor; saw “environmental” doctor; saw neurologist; had bad reaction to Unisom; tried Xanax; Zetonna trial; had hellish 2-week repercussions to autonomic testing.
November: Tried low-histamine diet for 5 weeks; methylation pathway, mycotoxin and adrenal tests; started vitamins again and Metagenics shakes; tried iv fluids and caused anaphylactoid reaction; another zyrtec trial; saw allergist; steps per day decreased below 700 and haven’t come back up.
December: New nephew G. was born; Christmas with sister; saw ophthalmologist; started juicing; tried Ativan.

Like last year, there were births, deaths, doctors, drugs, symptoms, setbacks and disappointments. And, like last year, what I see when I look at this is how lucky I am to have family that would travel across the city, country or ocean to visit me in my home and offer love and support, without judgement.

Happy new year to you all. 2014, please look different than 2013 ~ only in a good way.

Hubby sweeping in the new year, a family tradition. 🙂

Remember the little moments,

like this,

that were good.

Cheers.

~James Gandolfini in The Sopranos R.I.P.

November 25, 2013 by Elizabeth Milo

IV Saline Experiment

My doctor finally acquiesced to my pleas to try IV saline and see if it helped my symptoms at all. I really wanted to try it last month when I was going through such hell after the tilt table test (I still cannot believe how profound the payback was from what felt like a comparatively benign day of tests), but she wasn’t convinced it was a worthy experiment. It wasn’t until I sent her POTSgrrl’s post (thank you!), that she thought we could give it a try.

I scheduled the appointment for the day my period was due because that is typically when I am most incapacitated by ME symptoms. It was 6 hours from the time we left the house until we returned. I never expected such a long day. We did 2 full bags of saline over a little less than 3 hours (and it took 3 tries to get the IV line in. Twice, the nurse said, “Shoot, I blew the vein.” I didn’t know what “blew the vein” meant and I was lying down and couldn’t see my arm, so I had a panic about what complications would happen, how much blood was everywhere and whether we should continue. Once something is underway ~ a treatment, a plane trip, anything ~ I don’t fret at all, but, during the time when I can change my mind, I always start to second-guess my decision. Maybe I shouldn’t have asked for saline. Everything always goes wrong. Maybe two “blown” veins is the universe telling me this is a bad idea. Maybe I should stop it now and go home. But the nurse went and got a different person to put in the IV and she was quick and confident and, once it was done, my mind was at ease).

The worst part about the treatment was how cold I was. The room was freezing and I spent 4 hours in there covered in blankets, my heated vest (it has a battery pack), my coat, my scarf and gloves, my husband’s coat, a water bottle that my husband filled with hot water from the tap… It was ridiculous.

Below is the email I sent my doctor this morning. I wanted to post it here so I have a record of how this treatment helped. Or didn’t.

Hi Dr. XXX,

My BP was 96/63 originally, somewhat the same after 1 bag of saline and, after 1.5 bags, it had actually gone down to 88/XX. After we were finished, it was back to the 9X/6X range again.

The good repercussions:

My heart rate has been so low. WOW! Morning HR on Saturday and Sunday was 53/54 bpm and, sitting watching tv, my HR was mid- to high-50s. That’s about 15 bpm lower than usual. Activities that would normally put my HR above 110 bpms (such as walking up 6 stairs and getting in bed) were only causing me to go into the 80s. The effect lasted all weekend.
My BP was higher than normal Friday night (109/67), but went back down the next day.
My period came Saturday morning and was definitely easier than it has been in the past few months. Cramps were minimal and I didn’t feel dizzy, however my muscles were still very sore and achy.
My energy was not bad over the weekend. I took 1400 steps Saturday and Sunday, which is a lot for me.
I was able to wash my cpap on Saturday and go out on my scooter for 45 mins on Sunday, both of which would normally be too much on the first two days of my period.

The bad repercussions:

The most prominent difference is, although my HR has been low, my heart feels like it is “tripping” every so often (maybe 4 or 5 times an hour). This is brand new. It feels like a pitter-patter palpitation, like it skips a beat or speeds up for a second… When this happened, my HR was still low.
It was a 6-hour total excursion, which, for me, is unheard of. This had to have repercussions.
I felt terrible Friday night. Heavy, inflamed, wiped out.
My eyes swelled up A LOT after the saline, as did my fingers, my sinuses and what felt like my lungs (my breathing felt laboured).
The spot in my throat under my jaw that itches when I am having an allergic reaction has been very itchy since Saturday morning (saline? period? something I ate?).
I slept poorly Friday and Saturday nights and woke up too early both days.
I woke up this morning (Monday) feeling HORRIFIC. Much worse than any day in the past week. Completely wiped out, in pain, barely able to get out of bed. Feels like the flu (throat, muscles, head), but of course it’s not. I don’t know if it’s payback from the appointment and the weekend or what, but, if there were benefits from the saline, it looks like they are gone now. HR is back to being in the 70s when I’m sitting.

Thank you so much for being willing to try this experiment! I really, REALLY appreciate having someone in my corner.

I’m going back to bed for the day now because I feel worse than I have in weeks. But I’ll leave you with some scenes from my scooter-walk with my husband and pups ~ now the thing that gives me the most joy in my life.

Rag and Bone Shop of the Heart

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

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