My Career in Healthcare.

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My view this morning… and all too often.

Recently, I was imploring my husband to find opportunities for couple-time in his schedule, get me out of the house so we could do “fun” things, spend time as a family… I wanted to drive around and look at the extravagant Christmas house lights over the holidays or see the Christmas ships; I wanted to visit Snoqualmie Falls, especially while it was raining so hard and the water would be high and dramatic; I wanted to drive north to look at flocks of snow geese; Seattle Symphony–anything! These things never happen and my husband said, “But every week your energy is maxed out with doctor appointments.” This is true, but this is calculated behaviour so I don’t go stir-crazy or get depressed. I can manage about 3 things a week and I’ve been scheduling about that many appointments every week for years. Hydrotherapy, strain-counterstrain, myofacial release, pelvic floor PT, acupunture, mental therapy, dietician, as well as specialist appointments, follow-up doctor visits, blood draws and testing. When I don’t have something scheduled, my attitude goes down very quickly. I think I might quite literally go insane if I shuffle around the house in baggy pjs for too long, alone, talking to the dogs, cooking meals for one, keeping myself occupied with paperwork, illness research, watching tv– especially in the winter when I can’t at least shuffle into the garden.

I tried to take a week off once and I caved by Thursday and made a massage appointment for the next day. I was crawling the walls, feeling ineffectual, lonely, angry. I wonder how anyone without a spouse or support system survives, or patients who are completely housebound or bedbound or neglected in institutions (not to mention much more horrific situations of war, solitary confinement, POWs…). It’s the isolation more than the confined physical space, I guess. My appointments give me “somewhere to hang my hat” as my grandfather used to say — a reason to get dressed, a place to go and have a conversation. My “rehab specialist” asked me if therapy was helping and I said, “I get dressed and I get to talk to someone.” He’s obviously done a lot more than that for me (for example, helped me find the best doctors and get disability), but my point was clear. Shared experiences are much more important than I realised. Like the outcast monkey that would just hang out on the edges of the enemy monkey territory even though he could be torn to shreds at any moment because the drive for company and community is that strong (I saw it on NatGeo, it made me weep).

My physical therapist and I talk about books, movies, music, tv shows, politics and I get to lie supine and motionless while he gently fixes my pain. How could I give that up? But I would–to do things with my husband. So, that’s what I told him–my husband–and he seemed confused, asked: “You can just stop those appointments? You don’t need them?” It never occurred to me that he didn’t know I scheduled these things to save my sanity, to save me from offing myself. Isn’t that obvious? Of course I don’t need to go to them! I wouldn’t cancel my immunoglobulin infusions, but all other commitments would be trumped by the importance of quality time with people I love. Husband and dogs first, friends next (actually, friend, since only one visits. Love you, Z!), healthcare visits last. That’s how I schedule my weeks. If I think there might be the weather to go to the cemetery with my boys on a day that my husband can do it, I will cancel everything else. I’ve exhausted the search for The Doctor Who Will Fix Me. I’m happy with my GP, endo and body people. I’ve seen the best neurologists. I don’t really think I would benefit from an immunologist, allergist or rheumotolgist. Maybe one day in the future I will see an ME/CFS specialist, but, for now, I’m going to focus on other things. So, my goal for this year is to encourage my husband to work a little less and redirect some of our energy into more joyous experiences. I can’t be very spontaneous, but I can schedule an “appointment” to drive out of town or an hour in a coffee shop or even play a game at home.

I can’t even.

I’m in a bad headspace. Feeling overwhelmed and hopeless, like I just need to give up. I know what sparked it. I got a bunch of blood tests done — things I haven’t had tested in 1 to 3 years — and they’re all still a mess. I’m still a mess. I haven’t made any headway in years. I just feel defeated. There are so many things my body is fighting and either I’m not helping or nothing I do helps. But mainly I feel useless and inept because I can’t manage to research something thoroughly, plan an attack and implement it. I can’t commit to anything because I have no faith that anything will work. So many pills. So much money. So much effort. So much information to process. So many competing theories. So much time scrambling in one place, getting nowhere. I do nothing but read how to help myself — hours everyday for years — and I just wind up feeling like I’m drowning more and more because there is too much.

I can’t seem to manage a methylation protocol, or a detox protocol, or brain retraining like everyone else can. Or a liver cleanse or lymph drainage or help my leaky gut or what about parasites? I can’t seem to manage any diet changes: watch out for histamine, salicylates, oxalates, sulphur, tyramine, too much/too little protein, too much/too little fiber, too many carbs, not the right kinds of fat, dairy, sugar, mycotoxins, pesticides, chlorine/lead/chloramine in water, your tupperware is plastic, your pots and pans are killing you… it never bloody ends! And why does everyone do so well with physical therapy, acupuncture, myofacial release, Bowenwork, craniosacral, reiki, feckin Feldenkrais and nothing seems to work for me? I’m thinking about NAET and muscle testing, frequency machines, homeopathy and EMF sensitivity because what if?? But I know they’re all just black holes. Everyone has a magic pill or a serious warning: Don’t sleep on foam! Don’t go in a hot tub! Your milk must be raw! Your dogs are killing you! Don’t stretch if you have EDS, don’t spend too much time lying down if you have dysautonomia, enemas are wiping out your good bacteria, you probably have Lyme–go on antibiotics, the longer you wait, the worse it is! You definitely have mold because you live in Seattle–leave your house and possessions behind and get clear! I’m so over all of it. There’s no point in giving me advice to just tackle one thing at a time because I can’t. It doesn’t work that way. Time is slipping by; I’m getting older just sitting in one spot. Everything is connected and as soon as I decide to do one thing, I read how that can tip another thing out of balance and I freeze… and wind up doing nothing. My brain does not work like it used to. This is most frustrating of all.

Imagine you’re suspended halfway up a cliff face, trying to get to the top. You’ve spent months researching the best path to take and you have some energy, you’re ready. As you start to climb, people abseil past you, screaming, “Don’t go that way! There are perils up ahead!”
Then others beside you say, “Nah, this is definitely the best way, they don’t know what they’re talking about.”
Then other people all around start chiming in and you listen–while clinging on to the crumbling rock for dear life–because so many have made this climb before you: “If you want to get to the top, go left.” So, you start researching that path.
“No, go right.” Better check out that option.
“It doesn’t matter which way you go if you don’t eat this meal first.” Oh shit, glad I didn’t start climbing yet.
“No, doesn’t matter what you eat or where you climb, you’re fucked if you’re not wearing the right gear.” Energy is draining out of you and the fear is creeping in.
“Don’t be silly, you just need to spend all day every day telling yourself you can get to the top and you will.”
“Nope, actually this mountain is insurmountable when you’re as weak as you are. Just hold on as long as you can and hope that you get stronger before your grip gives out.”
And… I literally can’t even.

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Anyway, I pretty much want to burn every book I own, cancel all my appointments, throw out all the supplements and extricate myself from every group and forum, go to bed and give up… and, if I’m truthful, it’s all sugar’s fault. I have a grade A, deep-seated, fully-in-denial addiction and my candida blood test came back twice as high as the high result from a year ago that I ignored. Or at least candida IgM did and that’s the antibody that shows active/acute infection, right? I don’t want to go on another elimination diet. I don’t want to deal with something that will apparently keep rearing its fungal head forevermore every time I eat some ice cream. I don’t want to take prescriptions for months and deal with die-off and herxing for weeks. I just don’t. Even my husband is clanging a warning bell about candida, gently encouraging me to just try to quit eating sugar temporarily and I’m like a petulant child. I hardly eat any compared to the old days! I’ve given up so much! And then I ate a bag of kettle corn while pouting. This is waaaaaaayyy harder than booze and cigarettes. Way harder than gluten, dairy, nuts or anything I’ve tried before.

So there’s that. And then there’s these:
Cholesterol and LDL are higher than they were 8 months ago.
CMV IgG, which has been negative 4 times in the past, is now high out of range.
HHV6 IgG is still high out of range.
Mycoplasma Pneumoniae IgG is higher than it was (out of range).
EBV IgG is much higher than it was (out of range).
Sex Horm Binding Glob and Estradiol are high, whatever that means.
Total IgA and one IgG subclass are low.
VItamin D and Vitamin B12 are both low.

I’ll be talking to my doctor about all this in a fortnight, stay tuned.

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:

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What I see now from the top of the stairs:

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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.

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.

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.

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!

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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.

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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.

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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.
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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.

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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

What I’m doing now that may or may not be making a difference.

This morning, I had a high resting heart rate of 67 bpm. Yesterday, by comparison, it was 56. Since I’ve been tracking my morning HR, it has been a fairly good predictor of how stable my body will remain throughout the day. I anticipate that today it will be a little more difficult to go up and down stairs, I’ll have to rest a bit more, my blood pressure might be lower and I’ll undoubtedly take fewer steps than my current norm. I can tell by how achy I was this morning. But, last night, while getting ready for bed, I was happy and hopeful. I was feeling like I could really get better enough to live again and I vowed to write a post today about all the things I do that may or may not be helping.

I’m a completely different person than I was over Christmas. I thought I might never talk properly again, walk more than a few shuffling steps again, that I might just die in my room. I’m so happy now, my skin looks good (the dermatologist’s protocol worked!), I haven’t had to check my blood pressure or blood sugar in months because I feel stable. I don’t know what has brought about the difference, but I’ll list everything I do here so that I can reference it in the future and maybe it’ll help someone.

  • I stopped panicking about my sleep. Of course, if I get fewer than 4 hours, I’m upset and worried, but I seem to be able to sleep pretty well from 12am to 5 or 6am, so, I’m going to trust my body and be okay with that. When I’m crippled and hazy from lack of sleep, I remember the eternity I spent in viral, malarial night sweat hell. There is not much these days that is as bad as my nights were from November 2011 to early 2013. I will never be able to adequately describe how sick I was as my body tried to rid itself of whatever evil has invaded. So, I will take constant awakenings and nightmares in a DRY bed any day.
  • I track my resting HR every morning before getting up and before taking my thyroid hormones.
  • I lie in bed for a few hours in the morning, cuddling with my dogs and reading, with the shades open to let light in and set my body clock.
  • I wear my pedometer every day and have been taking 1300-1500 steps a day for the last two months versus 300-600 in December.
  • I usually have my light box on for about 45 minutes while I’m on the computer with my morning tea.
  • I only drink teas that I have researched and I trust the companies (their growing procedures, their tea bag materials– here’s some good help) and, besides my morning decaf black tea, I only drink teas that can supposedly help with one of my symptoms (tulsi, roasted dandelion root, ginger, chamomile, peppermint, licorice, fennel).
  • I drink a vegetable juice every few days in the morning, on an empty stomach (following these tips).
  • I do preemptive rests, as well as recovery rests. I lie down a minimum of 3 hours a day (on top of the 12+ hours I’m in bed at night). Ideally, this would be in 3 separate hour-long meditations, but it often winds up being 2 sessions. When I’m not doing very well, I can usually get out of bed for a few hours in the morning and the evening, but I might spend from 12pm to 7pm in bed, on top of 10pm to 10am. My preemptive rests consist of relaxation and meditation. They work by recharging my body and brain in what feels remarkably like what I imagine an old crappy phone gets when plugged in for an hour (my best friend described my body this way when I was still functioning and not housebound and I didn’t quite get how accurate it was until I spent a year “plugging in” to bed throughout the day). Recovery rests are different. My initial warning signs these days are neurological: my voice gets very weak and I slur badly and can’t find words. My head hurts, vision gets blurry, tinnitus cranks up, coordination is off and I get internal tremors. Everything takes immense concentration. The worst symptom, though, is what I call my “buzzy head.” It’s like internal tremors in my brain. My forehead feels numb and my brain physically feels like it is buzzing and vibrating… like every mitochondrion is rocking back and forth, sputtering and smoking, trying its best to spit out a little more energy– billions of microscopic engines, overheating, gauges in the red, pushed to the max. When this hits, it’s a really bad idea to push through and I go straight to bed and usually fall into a brief in-and-out, trance-like sleep as my brain recharges.
  • I do breathing exercises every day. While resting and during meditation, I do deep breathing techniques that I learned from a video to help with MS pain. They help strengthen my diaphragm and increase oxygen and carbon dioxide. Then, throughout my rests (and any time I think about it throughout the day), I practice abdominal breathing to help settle my nervous system and calm the fight or flight response, which we live with permanently when we have central sensitization issues. Jackie over at lethargicsmiles has a great description of this type of breathing here. I’ve also read that some people benefit from purposely slowing down their breathing to help blood gas absorption.
  • I change up my meditations depending on how bad my symptoms are. Sometimes I need complete silence and I lie very still with ear plugs in. Sometimes I just need white noise and I listen to Kelly Howell’s CDs that use binaural beats to stimulate alpha, delta and theta brain waves. All other times, I alternate through yoga nidra, Buddhist meditations, guided imagery, affirmations, body scans and simple breath meditations. Find some more links at the bottom of this post.
  • I loosened my routine and relaxed my demanding brain: if I need to spend all day in bed, that’s okay. I go outside when I can, I eat junk food when I want, I don’t beat myself up if I can’t bathe for a week or don’t go to bed until midnight.
  • I made peace with my cpap. I try to wear it every night, but, if I take it off after a few hours, it’s okay. And, if I don’t wear it at all, it’s okay. I know I feel worse when I don’t wear it — I keep that in mind and try to be organised about washing it early in the day because, before bed, I often don’t have the energy — but, when I don’t wear it, I don’t panic about the hundred million apnea events that woke up my brain while I “slept”. It’s okay. I’ll be okay.
  • I try to get to physical therapy every month or so, massage every two months (I would like these to be much more often, but can’t justify the money) and I was going to start regular hydrotherapy, but, unfortunately, after the first session, I realised it’s not worth the expense ($83), so I will try to mimic it at home (basically, hot and cold towels and electrostimulation).
  • Food: I’m sticking to my low-histamine + autoimmune protocol diet for the most part (that is: NO gluten, grains except rice, dairy except butter, legumes, nightshades, nuts, seeds, eggs, and no high-histamine foods, such as pork, tomatoes, eggplants, spinach, bananas, vinegar, fermented foods, processed meats, tinned fish/meat etc.). I was strictly low-sulfur for a month and that might have contributed to my feeling better, but I have since stopped that. I don’t beat myself up for my Kerrygold addiction and I don’t worry about my constant snacking and the fact that I go through sweet potato chips and plantain crackers by the bag-load and can’t seem to quit Salted Caramel Chocolate coconut ice cream. Life is too short. We buy organic and I eat a huge variety of veg and herbs. We always have fresh parsley, basil, rosemary, thyme, cilantro, ginger… We buy meat from farms we’ve researched and distributors we trust and make a lot of bone broth, which I drink everyday with a gram of salt in each mug. I recently switched from non-stick pans to stainless steel and cast iron. I drink filtered water. And I keep a detailed food and symptom journal (which, really, has told me nothing). That’s more than I ever did in the first 39 years of my life, so I’ve come a long way.
  • I’ve switched some products: I use Tom’s deodorant and toothpaste. I use supposedly less toxic shampoos, soaps and sunscreens. I use a face wash, moituriser, dish and clothes detergent that don’t make me gag with perfume and are kind to sensitive skin.
  • I use dry eye drops throughout the day and the Rxs from my dermatologist on my face. At night, I put castor oil over my liver and Badger sleep balm on my throat. When my neck is acting up, I use my TENS unit, cervical traction and Tiger Balm neck and shoulder rub. And then there’s vitamins and supplements…
  • Here’s what I take currently:
    • Morning:
      • thyroid hormones (T3 and T4)
      • Probiotic
      • 2.5mg Prednisone
    • Before meals:
      • Thorne Bio-Gest (for gastroparesis)
      • Digestive Enzymes (for gastroparesis)
      • 250mg yucca (for high ammonia/CBS mutation)
    • After breakfast/mid-day meal:
      • 500mg Acetyl L carnitine
      • 100mg CoQ10
      • 36.5mg riboflavin 5’ phosphate
      • 15mg zinc + B6
      • 500-1,000mg vitamin C
      • 100mcg molybdenum (for high ammonia/CBS mutation)
      • Thorne trace Minerals
    • Sporadically:
      • 1 tsp Calm magnesium + calcium
    • After dinner:
      • 2,000mg fish oil (1,000mg EPA, 50mg DHA)
      • 4,000iu Vitamin D3
    • Before bed:
      • 400-600mg magnesium glycinate chelate
      • GABA+theonine
      • 1mg Melatonin
  • I am soon going to add charcoal, Thorne Medibulk, biotin, and a second probiotic with histamine-lowering strains of bacteria.

Something is making a difference. Or maybe it’s just time. Who knows? But I will continue to persevere.

Surgery and ME/CFS

After two weeks of wonderful, solid sleep with few awakenings, I was beginning to see the light. Over the long weekend I started to feel more normal than I have felt in months ~ maybe a year. I could do so much more during the day and I was still feeling alright before bed. I didn’t have any periods of utter exhaustion or flu-type feelings and my brain was firing on more than one cylinder (not all cylinders, but obviously more than usual). My physical therapist and I always talk about movies, tv shows, music and books and I can never come up with names or titles: “Oh, you should read… I can’t think of the name… it’s written by what’shisname… you know, the American guy that was living in England…” I get so frustrated. There have been many times I wish I could text him after I get home and can look up the ten things I was reaching for. Yesterday, my brain was a smooth operation. It truly felt like somebody had lubricated the synapses. There was a sense of physical spaciousness. It was a well-oiled, humming machine, almost like my healthy days. “Edward Norton was great in Primal Fear. I loved him in American History X… Yes, I adore Kevin Spacey. He was so good in American Beauty. And Seven! Oh, and the David Mamet play… Glengarry Glen Ross ~ so good! And Swimming with Sharks. I’d love to be able to see him in Iceman Cometh on stage…” All those names! They just came to me! No searching, no hard grinding mental gears, no giving up in frustration. It just illustrated the limits with which I’ve been living.

Anyway, last night I didn’t sleep and I feel dreadful today and my head hurts and my brain hurts and I fear the worst for a downhill turn. I got 4 very broken, very uncomfortable hours of sleep because, in the middle of the night, I woke up with a terrible pain in my abdomen. It is a recurrent sharp stabbing in the upper right quadrant, which has me grimacing and sucking in air every few minutes, trying not to gasp or moan so my dog doesn’t panic (which he does when I’m in pain). Throughout the night, I did everything I could think of: walked, sat, breathing exercises, massaged, drank water… Nothing helped and it is still with me now, nine hours later and definitely has me worried. I assumed it is a issue in my bowel because that is where all my problems lie, but I spent the night lying in the dark quiet, worrying that is my appendix (also, I had a bowel movement and nothing changed). I’m not vomiting and I don’t think I have a fever, so I’m not jumping to see a doctor. But the pain hasn’t dulled at all and I am so, so tired. If it continues into tonight, I won’t get any sleep again.

As I lay there last night, I was tormented by the thought that it would suddenly get more serious and I would need surgery for something. I thought about all the info that I would want doctors and anesthesiologists to know in an emergency situation and decided I had to get up and write a doc that my husband could produce if I were incapacitated. Below is what I put together and I thought it might help someone out there. I wrote my own list and, afterwards, I read Dr. Cheney’s and Dr. Lapp’s advice online (to make my list more thorough) and it is incredible how closely I fit the ME/CFS mold. After two years it still amazes me when my health history PRE-ME fits all the symptoms and idiosyncrasies. For example, vasodilators are problematic to ME patients and I already knew this was a problem for me before becoming sick because of my history with idiopathic anaphylaxis and alcohol causing collapse. Also, the doctors mention sensitivity to epinephrine and I have always told my dentists not to use epinephrine in my shots ~ it has been a nusance for them because they have to give me injections over and over again as my body metabolizes the anesthesia so quickly without the epi. And I had low blood pressure and experienced vasovagal syncope decades before I came down with ME, so reading that Dr. Lapp says “Up to 97% of persons with CFS demonstrate vasovagal syncope” amazes me … still.

I would love to know if anyone has any more information for safe surgeries and/or hospital stays. I’m hoping preparing for emergencies can mitigate long-term crashes.

Here is Dr. Cheney’s advice for surgery and here is Dr. Lapp’s (they’re very similar). I also took Sue Jackson’s advice and made the first sentence: “The most important considerations are…”

The most important considerations are IV fluids, avoiding vasodilators and histamine-releasing agents, and my hyper-sensitivity to medications.

I have a history of hypoglycemia, idiopathic anaphylaxis, autoimmune urticaria and angioedema, Hashimoto’s, vasovagal syncope.

I am allergic to NSAIDS and CODEINE/HYDROCODONE and have other presumed allergies which may have caused tongue swelling (see attached list).

I have orthostatic intolerance (OI) and vasovagal syncope: low blood volume, low blood pressure, high heart rate when standing/moving. Please give me extra saline IVs. Care should be taken to give me adequate hydration prior to surgery and avoid drugs that stimulate neurogenic syncope or lower blood pressure. Syncope may be precipitated by cathecholamines (epinephrine), sympathomimetics (isoproterenol), and vasodilators (nitric oxide, nitroglycerin, a-blockers, and hypotensive agents).

I am extremely sensitive to drugs, usually taking ¼ doses or children’s doses. Please use all drugs sparingly until my reaction can be assessed and do not over-medicate me.

Vasodilators, such as nitrous oxide, should not be used because of my history with autoimmune angioedema, anaphylaxis and orthostatic intolerance.

Use anesthesia that does not release histamine: Histamine-releasing anesthetic agents (such as sodium pentothal) and muscle relaxants (Curare, Tracrium, and Mevacurium) are best avoided because of my history of idiopathic anaphylaxis and allergies.

Use a non-hepatic anesthesia: Potentially hepatotoxic anesthetic gases should not be used, such as Halothane.

BEFORE SURGERY: Serum electrolytes, magnesium and potassium levels should be checked preoperatively and these minerals replenished if borderline or low. Intracellular magnesium or potassium depletion could potentially lead to cardiac arrhythmias under anesthesia. A liver panel and a random serum cortisol should be checked prior to any general anesthesia. 24-hour urine cortisol is recommended before and after surgery.

I have a sensitivity to Epinephrine. For local anesthesia, perhaps use Lidocaine with no epinephrine.

I have a cervical spine injury. Please be careful and gentle when intubating!

It would be wise to keep me on oxygen the entire time I am in the hospital.

Prescription and over the counter medicines and supplements: Please see attached list.

Hope for a great sea-change

One of the things I never realized about chronic illness is that it is easier to drive than it is to take a shower. If you see someone driving their car to an appointment, you might think they’re doing okay, but that person may have needed help to wash their hair that morning. And, by “morning”, I mean afternoon because it probably took a number of hours to get from waking to bathing.

I can drive myself to nearby appointments and I can talk for the whole time I’m there – half an hour sitting up with a doctor, an hour lying down with the physical therapist – but, if someone witnessed this, would they understand that I couldn’t write a blog post that day, I had to put on clothes in increments over the course of an hour, I had to rest in a dark, silent room immediately before and after the appointment, and, if I had slept poorly, I would have canceled?

My husband has been washing my hair lately. I sit on my seat and he leans awkwardly into the shower while I rest my forearms on my knees and hang my head. He also helps me dry my hair. I sit on the toilet in much the same position as I did in the shower and he stands above me with the hair dryer.

My sister comes over to help me with laundry. It’s been a long time since I’ve expended the energy needed to fold or hang clothes, so there are wrinkled piles of clean, dirty and not-clean-but-not-dirty-enough-to-be-washed items in various rooms. I never thought my husband would be scrubbing my scalp while I sit naked and motionless or my sister would be sorting my underwear while I am supine, watching.

It seems like a new low, especially in light of the fact that I’ve been housebound for a year, I’m walking under 1000 steps a day and it takes about 15 minutes of activity to wear me out. But I don’t think it is a low. I feel hopeful; overall I may feel healthier than a year ago. I’m more debilitated now, but less ILL. More chronic, less flailing, flaring, uncontrollable. A year ago, I was freezing all the time during the day and drenched in night sweats whenever I slept. I was in constant pain and felt fluish every day. I was still going to the dog park and grocery shopping, but I was scared and overwhelmed. Maybe most of the improvements have been mental– now, when the viral symptoms descend, I don’t panic. I understand that this could be lifelong and any progress will always be at a snail’s pace. I understand there may not be progress at all, it may only get worse. I know now there will be spans of no pain and I just need to take one day at a time. In fact, every single night when I go to bed, I am excited at the prospect of another chance in the morning– at the knowledge that a new day may bring a better day.

My husband says, it was a long road down, so it’ll probably be at least as long back up. I try to relax into the ride, do all I can to unburden my organs and facilitate healing. When my inner workaholic and constant student starts to writhe inside this straight jacket, I soothe her: You are working. You are writing, reading, learning about yourself and opening your eyes to suffering. I remind myself that I don’t have to talk to people that annoy me, drive during rush hour, meet deadlines or bow to bosses. When my night owl howls, I tell it nothing fun happens between 9pm and 2am. You’re not missing anything, go to sleep. I try to believe it. I remind myself that I never have to hear an alarm clock. I ease into bed with a solid routine and, when I wake, I lounge for hours. This is healthy, don’t resent it. When cabin fever and loneliness threaten to make my mind come apart at the seams, I pretend I am monastic. I am on a retreat. I am cleansing, enjoying solace. This is a temporary stillness. It is needed. Revel in it. I get to enjoy the garden and the sun. I get to spend every day with my dogs, even if it is lying flat on my back. I promise myself: The world will be there when your body is able to meet it again.

Maybe this low is where the slide stops and it’s all uphill from here. Listen carefully: “Believe in miracle and cures and healing wells.”

So hope for a great sea-change
On the far side of revenge.
Believe that further shore
Is reachable from here.
Believe in miracle
And cures and healing wells.

Call miracle self-healing:
The utter, self-revealing
Double-take of feeling.
If there’s fire on the mountain
Or lightning and storm
And a god speaks from the sky

That means someone is hearing
The outcry and the birth-cry
Of new life at its term.

Seamus Heaney,
The Cure at Troy
R.I.P.

Update: Symptoms and Doctor Appointments

Where to start? I am so behind on chronicling my life. You’d think it would be a one-liner (“Stayed home this month again, felt crappy, tried to keep spirits up.”), but there are so many subtleties to symptoms that I keep meaning to mention and so many tiny tweaks to treatments. There are so many interesting articles and blog posts that I want to comment on here and so many reasons to be hopeful and frustrated at current medical endeavors. I’ve written 100 blogs in my head this year that I thought were important and interesting ~ maybe even entertaining ~ but they never made it to the page and I’ve forgotten much of what I wanted to say. So, today, just an update.

Symptoms

First, the good news: my throat hasn’t been very sore in a while (if I don’t talk too much); my pain (below the neck) is minimal (if I don’t move too much); my dizziness is better (if I don’t stand up too much); my mood is ok (if I don’t think too much); 🙂  Haha, writing that was actually cracking me up! But, seriously, the underlying perma-symptoms of ME are stable and predictable if I don’t change my life up too much: exhaustion, achiness, tremors, horrid skin, blurry vision, stiffness, and fluishness are all manageable and (my) normal. The reality is, I feel unwell all day every day. Sometimes it makes me feel like I’m okay, I’m going to be fine and sometimes it makes me feel like I don’t want to die, I’m scared, I can’t do this anymore. My most pressing concerns lately have been, of course, the headache, terrible sleep, horrific bloating and constipation, and my free fall into less and less mobility and activity with higher and higher heart rate. Also, my brain torpor frightens me to the point that I can’t talk about it.

Thankfully, my brain pain train morphed from the high-speed TGV** to a kiddy carnival choo-choo. It still comes chugging through my skull in the afternoons and after I stare at a screen for too long, but, for the past 4 days or so, it is not torturing me. I stopped taking my Chinese herbs for a week; I don’t know if that is what caused or helped my headache, but I started them again yesterday (back down to 1/day) and we’ll see what happens.

3 weeks ago, in a place of desperation and panic about my disappearing sleep and unrelenting headache, I rummaged in my “Drugs I Don’t Take Drawer” and found gabapentin. The first night I took about 50mg (half a pill) and immediately my sleep was better. I still woke up a lot and it was unrefreshing as ever, but I slept for 8-9 hours rather than 6. That slice of heaven lasted a little over a week and now I’m back to the same terrible sleep, exacerbated by a very rare Seattle heat wave with no air conditioning. I added melatonin and went up to 150mg of gabapentin, but no relief (unless the gabapentin is the reason my headache is a better). I was prescribed trazodone for sleep, but haven’t gotten the nerve up to take it yet. I had planned to increase my dose of gabapentin first and then add doxylamine succinate and then swap the doxylamine for trazodone, if needed. Maybe I should just swap the gabapentin for trazodone since, just like last year, the gabapentin has caused awful constipation.

Let’s talk about that a bit. Within 48 hours of my first dose, things just stopped moving. It’s reached critical mass. I take a stool softener, I put soluble fiber in my tea, I drink raspberry leaf tea (thanks to a tip from Jess over at My Journey Thru ME, who wrote a great post on IBS), I take 400mg of magnesium before bed and I have been taking Miralax every single night. I’m still in bad shape, very uncomfortable, and worried that this is more dangerous than it would be in a healthy person because of my gut dysbiosis. The Good Doctor said, “You have to keep things moving because your bowels are in bad shape.” I think I’ll actually have to stop gabapentin to get back to normal.

My scariest symptom lately is my inability to do any activity without my heart rate skyrocketing. I’ve been sitting on the bathroom floor, washing my cpap equipment every week for the last 8 months. It’s never been an issue. Yesterday, my heart rate kept revving up to 110+ bpm while I sat in that same position, doing the same slow, careful scrubbing I’ve always done. This keeps happening. Taking pictures in the garden, reaching up to pick berries, talking a little too animatedly, putting sun cream on, adjusting a blanket, petting the dogs… Normally, if I were sitting down, these activities wouldn’t cause problems. Now, even sitting or lying, I feel that telltale sign (which initially registers as breathlessness, not as tachycardia), look at my HR monitor and am surprised every time: Oh, what was I thinking jiggling my foot while talking at the same time? How dare I wash my hands so vigorously. I should know better!

I can’t help thinking it is a direct result of deconditioning. It could be a direct result of illness ~ I know this is common is so many of us ~ but, the less I move, the less I’m able to move and that scares the shit out of me. So, every day I wonder: Should I push myself to “exercise” more so my body maintains some strength and life force? Or is that exactly what got me here and I should do less, less, less? This is one of the many contradictory evils of this disease: The less activity you are able to do, the more you panic and want to try doing more.

Medical professionals

I’ve had a some new appointments in the past few months:

1. An amazingly wonderful physical therapist whom I have been seeing each week. He is not really a PT; I don’t know the name for what he does. I lie on his plinth (I learned this name when I said to him, “That pain made me come off the bed. Sorry ~ ‘table’.” And he said, “Actually, ‘plinth’.”) and he finds the rotten-apple spots in my muscles and then eliminates them by restoring the circulation with magic fingers. I don’t have to move and there is very little energy expenditure (besides our tendency to talk nonstop about music, movies, books, and food. We never talk about my illness except for the initial update on my current problem areas. I probably chat more “normally” to him than anyone else in my life and always leave smiling ~ that, in itself, is worth every penny and drop of ATP). This treatment is the number one first time I have had a very obvious FIX to a problem. He worked on my lower spine pain and coccyx burning and, that evening, IT WAS GONE. And it stayed gone! He’s a magic man.

2. Stupidly, obtusely, naively, I went to see a cardiologist about my BP and HR issues, plus the fact that bowel rumbling triggers a sort of vasovagal heart flutter and lung tightening. I’m sure most of you people with ME know what’s coming. This doctor said, “I see a lot of you girls with low blood pressure and syncope problems and you all have one thing in common: low body weight. You need to gain some weight. Eat more protein and salt. I know everyone is concerned about being thin and looking good, but it’ll help. Start walking more and lifting 5 or 10lb weights and come back in 6 months.”

As carefully and stoically and graciously as I could, I said, “I am 5 foot tall. This is the heaviest I have been since college. [Here he interjected: “Right. And I bet you feel better.”] No, I don’t feel better, you moron. If I gain weight, it’ll just be fat because I can’t move very much. I don’t care what I look like because I’m just trying not to die I don’t ever get dressed or leave the house, you condescending bastard. I can’t imagine using 10lb weights because I wouldn’t be able to leave the bed for weeks can barely lift my arms, but I’ll try increasing my steps. See you never.” He’d be happy to know that I have since gained another 5lbs from the gabapentin and, shockingly, I don’t feel any different except I am even more uncomfortable in my body than I was last month (and, no, Dr. Iseealotofyougirls, I don’t mean uncomfortable with how I look, I mean it is not comfortable to lose most of your muscle tone and gain 12lbs of fat in its place!)

3. The saga of the oral appliance (OA) for sleep apnea. Here’s the wrap up: I saw the orthodontist in April, waited over a month before being told I had to see a sleep specialist again for insurance to approve the OA, and then waited over ANOTHER month before being called in to fit the OA (a 2 hour appointment!). I slept with it in for 5 hours and woke up in extreme pain. Yes, it had the obvious repercussions, such as temporarily changing my bite and making my TMJ sore, but the big problem was pain stabbing into my top and bottom right canines. It felt like they had been drilled into without anesthetic. So, back to the orthodontist for another fitting, which ended in a decision to send the appliance back to the lab for tweaking. Milo’s Law: if it can go wrong, it will go wrong for me. It’ll be another 3 weeks before it comes back from the lab.

4. On a good note, after I saw my GP, she sent me a letter saying she was shocked by my decline and panicked to find something to help me and sorry the medical community is failing me and honored that I allowed her to take this journey with me. I wish I could reprint the letter here because it could restore some faith in medical professionals, but I want to be respectful of her privacy. She is leaving for her annual 2-month break, but is seeing me next week on her last day and is willing to run some new tests (finally!). I’ve researched nonstop for the last month, trying to decide what tests to request, but I’ve ended up more confused than when I started. I need to email her tomorrow with my list. If anyone has any advice, please let me know. I can always talk to her about additional tests at the appointment. Here are my thoughts:

  • Mycoplasma tests
  • Cytokine profile
  • NK cell function test
  • Hormones (ACTH, LH, HGH, testosterone, insulin like growth factor(?))
  • RNase L Panel
  • Immunoglobulin
  • Lactic acid
  • folate
  • DHEA sulphate
  • Heavy metals
  • Amino Acid
  • IgG (?)
  • potassium, copper and …?

For disability (but really don’t want to do):

  • Neuropsychological Testing
  • VO2 Max (although it would be a 1-day stress test done by somebody who doesn’t know about ME)
  • tilt table test

 

Daily gratitude:
I am grateful for the few friends I have.
I am grateful for the few hours I sleep.
I am grateful for the little energy I have.
I am grateful for the still life I lead.

** I’m sure there are faster trains now, but, back in the 90s, I took the TGV all over Europe and its speed made a lasting impression. I still say “tay gjay vay”, pronouncing the letters in French, which is how I learned it.