November 25, 2014 by Elizabeth Milo

November Update

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

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

What it used to be like:

What I see now from the top of the stairs:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Grainy photo, but you get the gist.

What else?

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

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

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

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

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

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

I’m still going to therapy. It’s been great recently. He’s very interested in cultural history as a jumping-off point and that is helpful for someone who mourns the loss of Ireland and regularly starts blubbering over how powerfully I miss it.

I have a lot of issues to work out there– An American by birth who never questioned that I was Irish, but wound up back in America and then felt rejected by the country I love… Marrying a man with an identical upbringing and thinking, “how perfect! We can relocate back home,” but it’s not home to him anymore… staying in America by default, year after year, but always wishing I was in Ireland and planning the eventual return… and then getting a disease that stops me from returning, so I have no choice, anyway. My therapist asked me if I’d be able to manage my illness better if I were living in Dublin and I said yes because my mother, aunt and best friend live there. And so does my heart. But it’s a difficult place to live and we’d have no money, so that’s not the answer.

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

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

July 23, 2013 by Elizabeth Milo

Another Day in the Life.

Last weekend an old friend called to catch up after a few years. We had planned the day and time of the call, so I made sure I had the energy for it and didn’t have anything else scheduled that day besides a massage. After half an hour of talking to him (he is as energetic and animated and happy as I used to be), my voice began to get hoarse and the shakes started. I was lying down while talking to him ~ this is always easier ~ but I was outside in the sun, so I moved in to the blow-up mattress that is now in our living room, trying to quiet my system. We talked for another half hour and I wanted to keep going ~ we still had more to cover ~ but I could hear myself slurring and now my head was hurting and my ears were ringing and the internal tremors were so pronounced I think the phone was twitching against my ear. It was wonderful to talk to him. Catching up with family and friends is always good for my mood and fans the flames of life force… but, I knew it had taken too much out of me.

I spent the next few hours resting and then left for my massage. I was driving myself because the place is very close to our house and the last time I was there it wasn’t a problem as long as they put me in the ground floor room and I didn’t have to climb up the steep stairs to the second floor. I don’t get massages very often, but, when I do, I really love them. I ask her to “make my muscles feel like I went running without any of the energy expenditure or lactic acid build up” and somehow she does. It really helps my neck pain and headaches, too.

So, I arrive and realise I have to park across the street instead of directly outside the door because my appointment is later in the afternoon than usual and there is no parking between 4pm and 6pm. I am already running a little late because, after the talk with my friend, every little thing I did caused my heart rate to go too high and I had to move very slowly to keep it under 105 bpms. The chair in my car has a manual lever that you crank to raise it up. My husband is 6’2″; he has it at the lowest setting. I am 5’0″; I have it at the highest. Never before did I realise how many times you have to crank it to raise the seat up. Crank, crank…rest, breathe…crank, crank…rest, breathe…. The things I never knew about aging and injury and illness: I need an automatic car! I need automatic seat movers! I need a bathroom that doesn’t involve going up and down stairs!

[That last comment was off-topic because, the day after the massage, having made it to the garden but needing to drink a lot of water to continue to flush toxins and keep my BP up, I squatted in a corner of the shrubs to pee. You never heard that. Don’t tell anyone. But it saved me about 200 steps]

So, I parked across the street and it was another of those oh-shit-I-never-realised-the-gradient-was-so-steep-here moments. I walked very slowly and carefully ~ carrying my far-too-heavy purse ~ the few steps that brought me directly across from the door to the massage place. My heart was hammering, so I stopped there and waited. And waited and waited. Another bad thing about a later Friday appointment: there was WAY more traffic than usual.

Now, back in Ireland, there are crosswalks, but you certainly don’t need one to cross the road. It was like a game of Frogger: cars didn’t slow down and you bounced your way through lanes of traffic, working diagonally towards the place you were going so as not to waste precious time with right angles. We were quite skilled at it. I would get annoyed if a car slowed down when I was in the street because he/she was just messing with my timing and rhythm. I would wave them on: go, go, go… I have other lanes of traffic to sync my gait with… But here in Seattle? People are aghast if you don’t use a proper crosswalk with a proper green man telling you to properly proceed. Within a few years of being here, I had been given THREE jaywalking tickets ~ and the fines were hefty!

[Another quick aside: I was given the first ticket when I was 23 or 24. I had been heckled by someone outside a bar after closing and was walking home alone when I saw he was following me. I made a bee-line diagonally across the street to get to my apartment as fast as possible and, in the middle of the road, I felt a hand on my shoulder and wheeled around to hit it off of me, thinking it was the guy from outside the bar. It was a cop. He said, “You’re jaywalking. Don’t you answer when someone calls you?” I said, “No, it’s 2 in the morning, some creepster was following me, I was just trying to get home. I didn’t hear you.” He said, “Come with me” and motioned to the footpath back the way I had come. And then slooowly, smirkily and assholey, wrote me a ticket. I had been drinking and I was scared and I was pissed off. I said, “Jaywalking? Can’t you go catch some rapists or something?” And, I swear to god, his answer was: “Actually, there aren’t very many rapes around here.” I still get fired up thinking about it!]

SO, after waiting long minutes for the traffic to be clear in both directions, so I could slowly make my way across the street to the massage place, knowing I was now about 5 minutes late, I decided it wasn’t going to happen and I would have to cross the first side when it was clear and then weave through the cars stopped at the traffic light on the far side. But, when you have this illness, you can’t hop or skip or hurry your steps… you can’t really lift an arm to wave thank you. And the people in the cars looked at me like I was SO rude and one person raised their palms up as if to say “What the fuck?” and I realised the light had turned green and I was still doing my sloth-walk to the curb. I tried to look remorseful, I mouthed ~~“I have this mitochondrial dysfunction and dysautonomia issues and weak muscles. I know I look able-bodied, but I’m not, please be patient”~~ “sorry” to the driver. It was the longest walk across a road in my life.

Then I had to tackle the 5 steps up to the door (oh no, this is too much) and, when I walked in, the owner and my massage therapist were sitting in the waiting room – waiting. For me. I sat down. The owner (whom I know from my old life) said, “I was starting to get worried. You’re always early.” I burst into tears. I still hadn’t caught my breath and time was ticking away and I was embarrassed that parking across the street had caused me such problems.
“My heart rate… It took me longer than I anticipated to get across the street,” I said.
My massage therapist (who knows all about my illness) said, “To get to the crosswalk?”
I thought about the crosswalk ~~100 miles~~ half a block away. “God no. I could never make it to the crosswalk.”
The owner said, “Next time you should park on the next street over.”
I said, “But that’s a lot more steps to walk.”
He halfway joked, “You need a Segway.”
I said, “I wouldn’t be able to stand.” Because, believe me, I have considered every option out there.

The three of us just sat there for a minute and I felt the panicky, trapped feeling I get every time I realise just how difficult every inch of the world can be and how ill-equipped society is to help. Every moment takes energy and every day needs to be so carefully thought out in advance. Nobody can understand this unless they live it.

Afterwards, my massage therapist surprised me by running out to get her car so she could DRIVE ME ACROSS THE STREET. I wish I had taken a photo ~ it was literally across the street and down a few car lengths. The gesture was so kind and generous after I had her now running about 15 minutes behind, that I didn’t bother telling her that walking uphill to her car idling in the alley and clambering into her tall SUV was as difficult as walking unaided back to my car on the downhill slope.

Gratitude for the day: for all the healthy people that go above and beyond to understand and accommodate and have compassion for people with disabilities.

Rag and Bone Shop of the Heart

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

Tag Archives: stairs

November Update

Another Day in the Life.