September 26, 2016 by Elizabeth Milo

Brain symptoms and sleep.

I wanted to clarify something from my last post. I got a few messages which made me realise that when I said, “This year, my worst symptoms by far are from the shoulders up”, people thought I meant the over-analytical, perfectionist tendencies I have, which cause me to ruminate on details and not be content with anything. It makes sense, since that is what I was discussing for the majority of the post, but that’s not what I meant. In no way do I consider those tendencies — my personality — to be symptoms. It might make things a little easier if I weren’t always craving change and could accept life as it is, but I love that part of me that never feels settled, it’s the part that longs to keep learning, better myself, change the world. With a different body, who knows what I’d be allowed to accomplish.

When I wrote about my worst symptom, I was referring to my Buzzy Brain. I’ve tried to describe it on here before and I’ve discussed it with doctors, but I’ve still never talked to anyone who seems to experience the exact same thing. I’ve started to wonder if it isn’t some sort of optical migraine or silent seizure or atypical narcolepsy. It comes on very quickly and it’s not brain fog, not even close. Moments of mental acuity, accurate recall and speedy connections — the confidence that I can master any information like I had in the past — are quite rare; my mind is usually pretty fuzzy, foggy. The Buzzy Brain is entirely different. It doesn’t make thinking difficult, it literally stops my functioning, both physical and mental. It starts with a physiological buzzing feeling in my brain, as though, if you could look under a microscope at the cells and synapses, you would be able to see the disability. I get testy, my forehead can feel numb, my eyes droop, I slur, my tinnitus roars, everything is impossible: walking, answering a question, watching TV… and there is no pushing through it. I can’t even relax in a dark room, listening to an audiobook. It is my great limiter because, even on days when my body and muscles feel capable of activity, if I have the Buzzy Brain, nothing can happen. The odd thing is, it is reset by even a very short nap. I can meditate in silent solitude, lying still for hours, and nothing will change, but, if I fall asleep for even 10 minutes, I get some relief. Maybe not total relief and maybe only for an hour, but enough to function. It is exactly like turning off a phone and plugging it in briefly just to get a little more battery life.

Of course this begs the question: is it 100% sleep-related? Could I eliminate this symptom if I had consistently good sleep quality over the course of months, years? I’ve had 5 sleep studies with no real answers. The first one in 2012 (long before I had my Buzzy Brain symptoms) showed my brain was waking up 49 times an hour. They diagnosed me with sleep apnea and gave me a CPAP.

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After the most recent one last June, my sleep doctor told me I didn’t have to wear the CPAP or my oral appliance anymore because obstructive sleep apnea wasn’t my problem. I was overjoyed because the CPAP keeps me awake all night and the oral appliance causes terrible jaw pain and TMJ issues. But, I know I feel better when I can manage to sleep while wearing one of them, so there’s something there. It was explained to me that as my tongue relaxes and my airway is just slightly blocked, my brain wakes up (not enough blockage for my oxygen to drop and not enough wakeage to be fully conscious) and that’s what it feels like, subjectively: that I’ve never really slept properly. This is part of nervous system dysfunction — the brain always being on high alert, never “allowing” deep sleep. So, although I may not need the CPAP for air flow, I feel better with it keeping my airway open so my brain isn’t triggered. But I can’t wear it, so what to do…?

When I saw my ND a few weeks ago, she said she wanted me getting 10-12 hours of sleep in every 24 hour period. I was incredulous. It’s impossible, that’s literally twice what I get now. She looked at me hard: “Then you’re not going to get better.” I told her I was wiped out after my hyperbaric oxygen chamber appointments and she said she wanted me to sleep 3-4 hours after each session. On top of 8-10 hours at night. This is truly ludicrous. I struggle terribly to get 6 hours sleep and I very rarely nap during the day. Plus, I hate bed. Hate it. I can’t see it as a place of healing, it represents life passing me by and sickness. My doctor said: “Would you rather force bed now and not be sick later or stay as you are forever?”

I’ve tried a lot of sleep medications and supplements and they’ve all had intolerable side effects, made me feel worse than the lack of sleep does or done nothing at all. I’m still not falling asleep until after 3am most nights. I know what everyone says about better sleep quality before midnight, but some of the best hours of my day are between 10pm and 2am, so I’m resistant to change. But I could go to sleep earlier, if I wanted to — my problem is not getting to sleep, it’s staying asleep and this is a harder issue to medicate. I thrash around in pain and nightmares for 5 hours, fight against encroaching consciousness for another hour or two and then my mind takes off at light speed and there is no going back. I feel quite helpless to change this and my doctor’s words are haunting me a bit now. Good quality sleep — or even just more hours of poor sleep — could be the ticket to healing.

I’ve gone significantly backwards the past few months, so I’m trying to convince myself that this autumn and winter will not exacerbate the downturn, but will be the perfect opportunity for hibernation and repair. So far, it’s not working. I see nothing positive about losing my garden oasis and the healing sun. I do have three new sleep medications to try, but… I don’t hold out hope. If anyone has any leads on a good pillow that doesn’t cause neck pain or ways to prolong sleep or force naps, please let me know.

March 27, 2015 by Elizabeth Milo

Sleep Study

Last Friday, I had my third sleep study in as many years. This one was to see if my oral appliance was helping my sleep apnea. I’m a pro at these studies by now, but it’s still an awful night’s sleep, no matter what. Check in is at 9pm and they wake you up between 5:45am and 6am the next day. My sleep has been a lot better in recent months, but it’s also gotten later and later. I haven’t gone to sleep before 2am once this year. I haven’t tried to change this because I don’t want to mess with whatever is working about my sleep. For example, last night I slept from 2am to 10am. My sleep is still fraught with problems and awakenings, but actually having my eyes closed for 8 hours is miraculous.

So, I knew I was in for a rough night during the sleep study. This time around, I wore my pajamas to the clinic since I would just be getting straight into bed; I brought melatonin, since I knew I’d be trying to sleep earlier than usual; I brought an electric blanket since it’s always cold (stroke of genius, it turns out, because I have a very hard time sleeping with icy feet); I brought both of my pillows (one for my head, one to support my legs when I sleep on my side); I brought water and snacks (didn’t need the latter); and, most importantly, I brought ear plugs. During my last sleep study, I was woken by the crackling of the speakers, the water in the pipes, the hissing of the air conditioning, the closing of doors in other rooms… Ev.eRy.Thing woke me. I can say, without any shadow of doubt, that finding ear plugs that block all sound and are comfortable enough to sleep in (i.e: NOT the $100 custom-fit hard ones) was the best thing to ever happen in my health life. The key was, my husband had to teach me how to put them in properly. I didn’t realise there is an art to this. Silence is pure bliss, even if it’s filled with various pitches of shrieking tinnitus.

Another trick I had learned from experience was to shower (and not put on any lotion) right before coming to the sleep study, so the sticky pads would stay stuck through all my nocturnal thrashing. In the past, the tech had had to wake me to restick sensors that I’d ripped off. It was also a pleasant surprise that the huge brick that connected all the wires, which used to be strapped to my stomach, has been eliminated.

Once I was all hooked up to the wires and monitors, I read for a bit and then tried to go to sleep at around midnight. I had to call the tech in twice: once to move the massive cord of tethered wires coming from my head and gathered together at the back of my neck like the brain plug-ins in The Matrix — that’s a design flaw when they want you to stay on your back — and another time because of the bright green speaker light reflecting off the ceiling and blaring through my shut eyelids. She got on a chair and threw a washcloth over the speaker light. Can’t believe no one else had ever complained about it.

My night was terrible. It felt like I was awake the whole time and I remember at one stage thinking I just needed to call the tech in and tell her I was going home because I obviously was never going to fall asleep for more than a few minutes at a time. Turns out, I was wrong about that. I did sleep, but spent an inordinate amount of time in stage 2 sleep, during which, my doctor said, you can be slightly aware of your surroundings. Was I ever. I also remembered snippets of about 5 dreams. It felt like I would doze for 10 minutes, have a dream, wake up and lie there thinking about it for an hour, before dozing off and having it happen again, over and over. Dr. M confirmed that I did wake up after every REM cycle, but said this wasn’t that uncommon. We surmised that my problem is, because I’m often having stressful dreams and nightmares, when I wake up it isn’t a slight surfacing and then back under, it is, instead, a fully awake, heart-pounding episode that I have to come down from. He said my “sleep architecture” was terrible (how I progress through sleep) and my brainwaves showed that I spent most of my time in flight or fight mode. I’m hoping this was exacerbated by being hard-wired into a foreign bed. I’ve done so much bloody work over the years trying to calm my nervous system and feel like I’ve made progress. The ear plugs are a good example — I spent years not even considering wearing them because then I wouldn’t be able to hear the intruder/dog whining/crackling of flames or any one of the other million crises that can strike in the night. I’m not on high alert anymore. Usually.

The biggest revelation to me that night was how much pain I am in when I’m sleeping. I thought I was just an extremely active sleeper but, just like my experience during the tilt table test when I was forced to lie on my back and stay in one position, all hell breaks loose in my limbs when I can’t move. Blood pooling, pins and needles, numbness, cramping, sore muscles and, worst of all, skeletal pain — deep aching in my joints and bones. I had to move to alleviate the pain and get my blood flowing, so, as much as I tried to stay on my back (where the apnea is a real problem), I wound up flipping from side to side, just like I do at home. I’d never equated the tilt table test to sleeping — while I was supine, there was no blood in my extremities at all and they went from numb to excruciating. I was almost in tears. I don’t know what to do about this particular problem, though. It’s not a painkiller issue. I think I need stronger muscles to help the bone and joint pain and, for the circulation issues… what? Would Florinef or Midodrine help with this? Can I just hire a gaggle of elves to rub my arms and legs all night long?

Anyway, there is some great news. I managed 3 short cycles of deep sleep during the night, which blows my mind when I didn’t think I’d slept at all. My oxygen saturation was 96-97% (that’s good). And… sound the trumpets… I had ZERO apneas or other breathing events. Picture me kissing my ResMed Narval oral appliance like Jimmy Stewart kissing the newel post knob in It’s a Wonderful Life. Mmuah mmuah mmuah! I love you, my uncomfortable little OA. I’ll never speak ill of you again. Even though you destroy my jaw every night, you are a much better friend than the CPAP mask.

So, with ear plugs and the OA, I’ve tackled 2 of my sleep issues. Now, I just have to work on the hypersensitive nervous system, temperature dysregulation, cervical spine injury, the night terrors, muscle aches, bone pain, joint bursitis, blood pooling, photosensitivity, intermittent drenching night sweats and the awful mast cell poisoning reaction events and I’ll sleep like a baby. Yay!

But, seriously, this is really good news. Sleep is absolutely the key to my healing. Oh, and Dr. M prescribed a newish sleep drug called Belsomra, which works on brain neurotransmitters. I think I might give it a try. 🙂

March 19, 2015 by Elizabeth Milo

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.

Yay! Beach!

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.

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.

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

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

April 3, 2014 by Elizabeth Milo

Emboldened and Emblazoned

Emboldened by my moderately successful drive to the nutritionist, I decided I could drive myself to the sleep doctor’s office on Monday, which is only a little bit farther away. I was there for the hundredth time to fit my oral appliance for sleep apnea. It has now been a year-long debacle and I’m pretty sure I’m going to have to find a completely different brand and a completely different dentist and start over. That also means it will cost me $850+ instead of the $0 that the current device was going to be because the clinic wrote off the cost to me after the first three mess-ups.

I brought a thank you card and some fancy chocolate to the orthodontist because, the last time she saw me, I was literally being carried out of the office by my husband, unable to speak and having a total body meltdown, after being there 2.5 hours. It was mortifying, and she’s always been considerate of my illness and empathetic, so I wanted to thank her for following through. She burst into tears. And I mean burst. She didn’t just tear up, she started crying so hard, she couldn’t speak. That made me wish I’d given her a far nicer gift. She said (when she regained composure) that it meant so much and she knew how hard it had been on me and I’d stayed nice throughout the process… It’s true, I did stay nice because I love my sleep doctor and, really, it’s a bad product, not a bad clinic, but they wrote off the cost because I made it clear to the clinic manager that that was the appropriate thing to do. I also made it clear, in writing, that the problem was not with me and had nothing to do with my illness or my anatomy. And I’ve started the conversation about getting help with the preauthorisation for some different type of device from a different clinic. I don’t think it’ll work, but I’m politely yet firmly letting them know that this was their problem and I shouldn’t have to pay full price for another mold to be made. But let the orthodontist think I am all peaches and cream. 🙂

Anyway, on Monday I was going back for a final fitting and it was 1.5 hours again of putting the thing in my mouth, grinding down the pressure points, spraying awful green chemical crap in the mouth piece, putting it in, clenching my jaw, pointing out where it’s hitting my teeth… on and on, over and over… That process takes so much out of me and hurts my neck and my jaw and rips up my lips. Plus, I had a horrible hypoglycemic episode and had to eat red dye #2 glucose tablets. Ugh.

When we were done, I couldn’t drive home – the world was spinning and my ears were screaming and my vision was blurry. I called my husband for rescue. He and his friend that he works with came to collect me and the car, god love them. I lay down on the concrete slab outside the clinic to rest while I waited. A 40-year old kicked back on the concrete in front of a sleep clinic in a sort of urban strip mall didn’t seem quite as acceptable as a similar sight when I was 20, lying on the concrete steps of a university building, writing poetry, feeling beatnik. But, oh well. I’ve laid down on restaurant floors and airplane aisles; I have no more qualms.

The sunny silver lining was: it was summer that day. One day of crazy heat. I took off my big duffle coat and then my sweatshirt and then my scarf and then my long-sleeved shirt and, by the time my husband arrived, I was in a tank top, baking myself, in deep meditation.

The other great things from this week:
A long visit with Z. and sweet baby Aja (who is not such a baby anymore!).

Baby Aja hanging with the Little Guy. 🙂

And I made it to the cemetery on my mobility scooter for a 40-minute “walk”, with beautiful spring coming to life everywhere I looked.

Rag and Bone Shop of the Heart

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

Tag Archives: apnea