Category: basics

The limits of mitigation: dishwashing

Isy / / adaptation, basics, CRPS knock-on effects, documentation, food allergies, loved ones, perspective, radical presence/radical acceptance, what works

This article is utilitarian. It provides descriptive terms for people with similar experiences to use in communicating with their doctors, payors, and loved ones.

It discusses the impact of an ordinary household task, and explains why doing such an ordinary thing could, in fact, be unthinkably difficult for people with certain neurological issues, even though their arms appear to function reasonably well.

It aims to mitigate some of the effects of the invisibleness of pain- and sensory-related disability.

Washing dishes is a problem. It’s never been fun, but it has been satisfying, because, talk about instant gratification: you do something and things are immediately better! I liked that!

Hoping for more autonomy, I recently got a great pair of washing-up gloves. Here’s what I’ve learned.

The problems with washing dishes are:

– The way water over the hands, which are rich in nerves, intensifies sensation and creates constant tactile input that multiplies every other sensation. I think it also has an effect on electrical conductivity in my hands and, as we know, the electrical conductivity in my hands is a complete mess anyway. This is where my CRPS started.

– Hot and cold temperature variation. This activates the C-fibres in my hands and forearms, the nerves that transmit hot and cold and itch and pain. My body has trouble distinguishing between those sensations. So as the water changes temperature – down to fractions of a degree, which most people would not even be aware of – my nerves and the blood vessel activity that the nerves can command are all just having a little meltdown.

– Because of histamine issues and allergies , most of my dishes are glass or metal. Both of those substances have a strong impact on my tactile sensation. (They’re hard to touch and uncomfortable to use, but I have to use them.) I think this has something to do with how extravagantly they conduct temp and, in the case of metal, electricity. Both of which translate to discomfort and pain and impair my ability to control the motion of my hands. This muscular impairment is a characteristic of long-standing CRPS.

So, between having to juggle all that sensation, all that pain, all that vascular/tactile disruption, and the loss of muscle control that comes with it, washing dishes is a real problem for me (cf. taking a shower. Another post for another day.)

Think about dropping glass and fumbling knives, and you’ll see what this means in practical terms.

My cat has learned how to respond when I break glass. She comes to the edge of the splatter zone and meeps to check in on me, then sits out of the way but in sight, supervising the entire process from picking up big pieces to sweeping the rest and finally getting up the tiny shards with large damp rags. Only then does she enter the zone and check my work! She doesn’t let me forget how important it is to clean it up properly, and comforts me considerably during the subsequent recovery time.

I got some dishwashing gloves, hoping they would help. What I’ve found is:

– They eliminate the water contact – until my hands start to sweat. Since they are necessarily an artificial substance, this happens pretty quickly because that’s how my skin responds to manufactured surfaces. The term for this is “sudomotor reflex.”

– They reduce the temperature variations, but not as much as you’d think. I’m astonished, myself, to find just how sensitive these hands are to tiny temperature changes. This relates to “thermoregulation” and “thermosensation” problems in CRPS.

– They do help somewhat with dexterity because they’re nice and grippy. However, they don’t fit well because they’re a generic size. With the quick sweating and the temperature changes, the dexterity problem really isn’t resolved.

– I don’t have to come into direct contact with the glass or metal, and that does mitigate some of these issues. It’s just that they’re not the only issues.

The peculiar nature of peripheral neuropathy with CRPS makes this pretty much unwinnable.

So I guess I still need someone else to do my dishes.

If anyone can think of a way to rinse and load a dishwasher and then remove the dishes when they’re clean and dry but still solves the problems of water, dexterity, glass and metal … I would be happy to hear it.

I’m posting this not to whine, but because it can be so very hard to articulate these profoundly abnormal sensory experiences, and I know I’m not the only one to have them. As always, please feel free to link and copy, and I’d prefer it if you point to this webpage if you put this in print or online. Thank you so much! In the end, if you need to use it, then just use it. Spoonies unite.

Speaking of spoonies uniting…

The fact that this post got written without me going into a complete fugue state and wandering into traffic, or somewhere equally unlikely, is thanks to Elle and the Auto Gnome, who kindly took dictation — and kept me from wandering off in an effort to avoid thinking about this any longer than necessary! It’s a ghastly situation and my usual coping method is to articulate a ghastly situation once, and then focus on workarounds, spending as little further attention as possible on the ghastly thing itself.

Elle and the Auto Gnome blogs here.

She pointed out that being able to articulate these problems is darned rare, so I took the hint and we did this together.

May it be helpful to others in similar straits!

Competing needs vs. Layered needs

Isy / / basics, care team, food allergies, imp-possible, nutrition, radical presence/radical acceptance, self-care, what works

CW: food & size & related topics.

Many things are coming together and my soul is taking warmth and strength from the concatenation of care. I’m incredibly lucky — even blessed — and I feel my good fortune with all my heart. It’s a great, and unforeseen (by me), turn of events, after decades of raw struggle.

One of these blessings takes the form of a gifted young man who takes my complex & often conflicting dietary needs as a delightful challenge, rather than a terrible curse. His work with me is a hugely encouraging capstone to,

  1. A lifetime of food-nerdery,
  2. A career of nutrition-nerdery (not the same thing),
  3. Decades of increasing dietary stringency,
  4. Years of gastrointestinal fuss.

It turns out that addressing underlying nutritional needs can re-shuffle metabolic activity so that former limits are a lot less limiting.

I know, right? Who knew???

Horse & woman laughing hysterically

I’ve been dealing firmly with mast cell activation & histamine reactivity, by keeping everything I eat super fresh, freezing it in portions immediately, reheating in the microwave (which tastes a lot better than cooking it in the microwave in the first place), and keeping the dishes & utensils squeaky clean.

After doing this for awhile, it turns out I can eat brassicas again (cauliflower and broccoli, 2 of my favorite veg) without my thyroid flipping me the bird as it passes out.

I feel profoundly rewarded.

Competing needs: no brassicas; lots of winter veg.

Layered needs: calm down the mast cell activity & histamine responses, and my immune system is perfectly happy to take brassicas on board without trashing my thyroid in response!

Also, I was gaining weight rapidly around the time this kitchen-magician showed up; since my diet was so limited at the time (homemade parsley buns, homemade blueberry buns, farm-frozen chicken, and sprouted lentils, with only olive oil & salt for flavoring) it was very easy to do a calorie accounting.

It turned out I was in hardcore starvation mode, getting only 700-1000 kcals/day. That’s not enough. It kicked my cortisol into high gear, which is overdriven anyway due to pain & dysautonomia, and manufactured excess adipose tissue from (apparently) thin air & bad grace.

I’ve roughly doubled that calorie intake; with my kitchen-wizard’s help, I’m getting loads more veg, too, which for me are a sort of cure-all — whatever is wrong with me, it eases up if I get more veg.

Keep in mind that *any* consequence of starvation is unhealthy. Losing 80 pounds to starvation is even more horrifying than gaining them. It hurts less, but it’s more dangerous to kidneys and system function.

It’s a peculiarity of our modern sensibilities that gaining weight due to starvation is absolutely invisible, because being fat is considered so repellent (the word “gross” translates as “fat” — that’s a strong linguistic clue), that shaming & blaming is the default response, even — especially — by physicians who should know better than to disbelieve, shut down, and further humiliate their starving patients.

This obviously needs to change.

My clothes fit more naturally and my feet & legs hurt noticeably less 3 weeks on. So, that’s much better!

Competing needs: more nourishment; fewer calories & more activity, I’m told.

Layered needs: adequate calories, so my cortisol can stop screaming about starvation and let my body work better!

There will probably be a lot more about the details — why are all my veg heavily processed or overcooked? What’s the recipe for those buns? How many diagnoses am I working around, anyway? How do you get onions in when you can’t go near them raw? — but that is, as it were, food for future posts. There’s a lot more info in this topic. It’s possible there are a few books in it.

 

Putting words to the problems

Isy / / basics, CRPS knock-on effects, food allergies, imp-possible, money, nutrition, radical presence/radical acceptance, self-care

Thanks to wonderful people, I’m getting help in my home. Holy hosannahs, people, it. Is. Amazing.

Stone angel with hands clasped in prayer, standing on a pillar, sun like a glorious halo

My part of the bargain is to get the state to step up to the extent I can persuade it to, hoping it covers the cost.

Ever since governments realized that keeping people safely at home is much cheaper and more productive than warehousing them, sensible states work to make that possible.

Naturally, they have checklists and formulae to determine what they’ll provide, based on neat cookie-cutter notions of disability, developed in tidy rooms by people with steady pay, good benefits, and a remarkable degree of job security.

I mean… I… ay, ay, ay.

TW: Describing the usually silent reality

Fellow spoonies can guess at the blind horror it was to climb right down into the mess of this life — where getting through the day requires me to gently ignore as much as possible — and blurch it all up, but thanks to an excellent psychotherapist who knows how to pull me off the ceiling, it happened today.

Mom, it’s okay if you skip this! It’s clever & apt, but grim in parts. Keep in mind that it’s not the whole story, just the relevant hard parts, because it’s written to the task of getting money out of the system.

I separated the “Why it is like this” from the “What it is I need” and I thought this might be helpful to share with others, since I’m far from the only one who has to do this. Hope it helps.

Letter stating what my helpers do

Dear Gate Keeper,

Here is a discussion of my needs and the help provided. Thank you for taking the time to look into this.

Cooking:

Diagnoses affecting my intake are numerous and often mutually contradictory (e.g., insulin resistance & gastroparesis.) Inadequate nutrition makes everything worse, as you know. Multivitamins can only do so much.

I mentioned “no shortcuts”: this means sauces, dressings, snacks, everything, has to be made from scratch, thoroughly cooked, and frozen fresh in order to be safe. This is largely due to mast cell activation syndrome (everything super fresh & clean) compounded by the inflammatory reactivity of fibromyalgia, CRPS, dysautonomia, and multiple food allergies and sensitivities which already existed (making the cost of failure high), plus gastroparesis (so everything has to be processed and cooked.)

Everything has to be frozen in serving sizes, because the mast cell reactivity and the downstream consequences of failing to account for that are so devastating. Then those many containers have to be washed and put away. Please see housekeeping about why this is such a big deal.

Shopping: pushing a cart is like holding onto a rail wrapped in barbed wire while every bump is like a blow to the frame driving the barbed wire deeper. Not having to go through that is important for being able to do anything else in the day.

Here’s what Person A does for me:

  • Shopping: drives me there, handles cart, keeps us on task, remembers what I forget.
  • Keeps kitchen clean, functional, organized.
  • Keeps fridge and freezer ditto, which I couldn’t do for years (temperature, metal & glass contact; see below.)
  • Works closely with me to understand dietary limits and possibilities. Much learning, checking, & creative thought involved.
  • Preps, portions, and stores fresh food.
  • Makes sauces, dressings, and desserts; stores them in usable portions for me to dress my meals with.
  • Cooks main meals and snacks meeting my stringent needs.
  • Serves me a fresh, hot meal every time he’s here. Everything else I defrost in the microwave.
  • Portions and stores everything.
  • Cleans the endless parade of dishes.
  • Provides apt advice on how I can make my nutrition easier to access and more satisfying.
  • Every bite has to be cooked (gastroparesis & g.i. disorders) so this means considerably more work and more dishes.

 

Housekeeping:

Anything involving contact with things that affect transmission of temperature and electricity is agonizing. CRPS and its peripheral nerve activity are essentially a matter of disrupted signaling, and these are hugely exacerbated by contact with metal, glass, running water, any water at anything other than body temperature, vibration (which is brutal – imagine a full-thickness burn happening inside your tissues down through the bones) and other sensations which would ordinarily not even warrant notice, but to systems like mine are limned, imbued, and soaked in pain. Not just ouch or even agony, but a pain that causes the motor nerves themselves to fail without warning of any kind. It’s very distracting and worrisome, as well as uncomfortable and risky. It can be dangerous, as the many glass objects I’ve broken in the past year attest. Dish gloves don’t work for me due to tendon problems and what the gloves are made of.

I’m a fall risk, due to the dystonia and the repurposing of motor nerves to carry more pain. (I can supply excellent peer-reviewed articles to support all of this. If I forget to provide them and you want to see, please let me know.) And, because of the many sensitivities and reactivities I live with, packaging and serving my food in glass dishes is essential. Cleaning them is mandatory. There are no better options.

Due to the combined effects of hyperflexibility, hyperreflexia, complex regional pain syndrome and the nerve damage and “windup” that goes with it, histamine intolerance and the tissue effects of inflammation, and other factors… movements beyond very moderate range have to be deliberate and controlled, or I risk injuring myself again.

This means that things like folding sheets, reaching, or making ordinarily repetitive motions put me at risk of injury, with disproportionately bad results and disproportionately long recovery time. Amidst all this, sensory sensitivity has developed across the board. (I was an emergency nurse, mid-distance runner, hiker, rock climber, and I liked the meditative nature of housework. This current reality is hard to live with, but it is what it is.)

Here is the list of tasks Person B does for me:

  • Recurring serious attacks on dust and mold in the home. I havent’ been able to get treatment for these allergies to a successful degree, and they impair me badly. Dealing assertively with these environmental insults is key.
  • Change bed. [I’ve deleted the bit about the worst incontinence. You’re welcome!]
  • Vacuum floors (vibration, auditory, grip)
  • Vacuum baseboards, corners, overheads vs dust.
  • Move furniture to vacuum underneath.
  • Damp soapy wipe down of baseboards, shelving, & all the surfaces vs dust.
  • Wash curtains vs dust
  • Mop floors vs dust in cracks
  • Clean bedroom carpet and rugs in house vs mold and dust
  • Deep clean bathroom, bedroom, and kitchen, to keep mold levels below functional threshold.
  • Spot clean (I drop things often)
  • Fold laundry
  • Dishes all the time. They have to be washed really well, because of the mast cell issue.
  • Errands: trips to P.O., pick up meds, get cleaning products, stock up on masks, and hopefully outings when it’s warmer.
  • Reminders: get meds, fill med organizer, change towels, etc.
  • Laundry: bedding, towels, clothes, rags. I have a small apartment washer that we have to use exclusively, due to horrible reactions to commercial cleaning products.
  • Clean asthma gear & vital-sign gear.
  • Equipment maintenance for air filters: changing filters, wiping down, checking seals, etc.

It’s hard to realize, until you‘ve been through it, how very helpful it is not to be tortured by ordinary tasks of daily life.  I appreciate your willingness to look into this.

Please let me know if you need any supporting documents.

 

Thank you so very much for your time…

Seeing, as in looking at, stars

Isy / / basics, brain care, Covid-19, documentation, imp-possible, loved ones, mortality, nature, perspective, radical presence/radical acceptance, reiki/meditation, self-care

I saw a whole lot of stars last night. Good for the soul, that.

I’ve been taking this opportunity to be in the experience of life without having to explain it, or articulate reasons to anyone outside my own skin. I had almost forgotten what that’s like. With very bright and articulate people in my life, it’s hard to get that in my personal life. Their need to understand is borne of pure love — they worry, because they’ve seen me through some rough times, and in order not to worry too much, they need to understand in their own minds what’s going on in this mind over here, which is in a completely different person. (Mom, you’re in good company with my lot! <3)

I’m in a lot of “thin end of the bell curve” categories, so this can take some doing: INFP (about 2-4% of the population, last I heard), serendipitously rather than linearly accomplishing (about 20%), and ADHD female (goodness knows, but the proportion seems to be growing as the markers are better understood), in addition to the weird requirements of all these illnesses — pretty much guarantee that anything normal won’t work, no matter how carefully I plan and execute.

This is the second summer in a row where things have not gone according to plan, so much so that a new term somewhere between “not according to plan” and “WTF just happened” needs to be coined to express it. I’m beginning to think I should just take this as a new life pattern, since the switchbacks tend to heal the dribbling wounds of layers & layers of PTSD. (Well-managed PTSD is not the same as resolved PTSD, although the most dramatic difference is on the inside.)

My friend and honorary BIL Ron wound up with massively metastatic liver cancer because 2 years of pandemic disruption and lousy treatment from LA’s indigent support system (which is a criminally bad system, worse than war-escaping migrant camps and most internment camps, according to the UN) left his early, localized, treatable cancer as an undiagnosed blurch on a CT scan which he had a few months before the pandemic was identified.

His care was denied because there weren’t enough staff or open beds. He was killed because of, but not from, Covid. When you think about maskless people and Covid deniers, think about treatable, localized cancer turning into a deadly and agonizing bloodbath for people like Ronnie.

Yeah… I’m not bitter… much!

Folks, this is not a drill. It’s not imaginary. It’s a fast-evolving pandemic in its early days. Read up on the Black Death for a little perspective.

A couple months ago, as people told themselves the pandemic was “settling down” right before the peak of record-setting waves of contagion and death (check the data, not the ideology) Ronnie bent down to pick something up, passed out, and woke up in hospital getting the third of eight units of blood. Then he found out over half his liver was lost to cancer and that treatment would only buy him a matter of months.

He opted to skip treatment and make the best of his remaining time.

He wanted to go fishing, so he set his mind to get strong enough for one last boat trip. His family proposed bringing him home to Northern California, where there’s glorious fishing in all sorts of waters.

Long story short, the appalling facility he was in was so good at losing contact information, that his hospice social worker didn’t realize he even had family until I had the option of including a gift card with a care package I sent from Amazon, and I included four names and numbers. Then things started happening.

If you’ve got someone in a facility, send them a card! It’s documentation that people care, and nothing happens in health care without documentation!

I never thought of it as anything other than a nice gesture, but turns out it’s a whole lot more: It’s evidence that they’re worth saving. ÷O

Put your number on it if they’re in bad shape, so the facility has someone to call. Atrocious that this should be needful, but hey, welcome to modern America! o_O

OK… maybe a *little* bitter.

Since I was about ready to have him kidnapped to get out of that stupid facility, we had contingency plans up the wazoo to get him out of there and home.

Even longer story short, it turned out that the only feasible option was to drive him home, which was a 2 person job and only one person in that elderly and health-challenged family could do that, so I changed my own plans (plan is a 4-letter word anyway) and got the soonest ticket I could.

As he listened to this planning conversation, Ronnie smiled from ear to ear with tears streaming down his face. He could take in how much he was loved and wanted, and he was going home to a slice of paradise to be surrounded and supported by the care of those who loved him.

Important note here: he already had this information, but he also had his own layers of damage which made it hard to let the information in. That resistance was there for a reason. You can say something to someone all you want, but if they aren’t equipped to accept it, it won’t go much further. There has to be a big enough change in themselves and their circumstances for those scars to shift, so the info can flow.

Ron was able to put aside everything that kept him from being able to accept that information, and he had, as the wise social worker said, “a moment of pure happiness.”

The following day, his condition deteriorated. We updated our plans to go visit and hope for the best.

The morning I was supposed to fly out, he was gone.

I did my quiet-inner-voice thing, and it said “go anyway.” So I did.

Bodhisattva oath

I’ve been contemplating the distinction between working the Bodhisattva vow and being a doormat (or codependent, as we call it now), off and on, ever since I discovered the concept when I was 12 or 13. It’s been an important part of my work of dealing with the last couple decades of harrowing illness, poverty, and systematized abuse as a patient. It’s become a regular topic recently in my meditation class. This is a big deal and an important point to consider.

The difference, it seems, is about self-care and responsible boundaries. These are particularly key for people who are women, healers, and in a vulnerable situation; it may not have escaped your notice that the wording which defines these terms was developed by men who had quite a bit of support in their work, and such people need a lot less protecting.

It’s healthful for people in habitual authority/access/power over others to embrace a practice of profound and selfless compassion. It gives them more insight and calm.

Those of us whose ground state is based on acute awareness of others require a more nuanced approach.

There are techniques which allow a diligent practitioner to pursue the Bodhisattva vow over the rim of what appears as boundaried behavior without psychological damage, but they only come after many years of serious training and discipline with qualified supervision. So, people like me have to be pretty darned careful how we proceed.

In short, I was in two minds about my own reasons for coming, but I yielded to the quiet tidal bore of my inner voice and took that flight.

Serendipity

I’ve landed in a beautifully imperfect place among people who wear their glorious sweetness and relentless flaws in flowing symmetry. From Ronnie’s kin, I’d expect nothing less.

Above all, I realize it’s not my bathtub to soak in and not a set of problems for me to fix. I’m just here as a welcomed guest and loved part of this extended & protracted family system.

This is a big deal.

There’s a lot of work for me to do (administrative nonsense, since death and life are both business matters; my trip will be paid for) and that’s healthy, because it’s easy for me and a real boon to the family. Healthy boundary there.

There is a lot of soft, verdant ground for me to walk on; a ton of stars spilling across the sky overhead; a cornucopia of Isy-friendly food pouring out of the greenery on this well-kept land; and my allergies have backed off considerably. My ex has put my health needs absolutely first in every consideration and the rest of the family is happy to support that. Definitely healthy.

And me? I’m not over-explaining! It’s amazing :D! I just quietly take care of my needs and appreciate everything that I *can* partake of. Good boundaries there, too.

I’m learning, carefully, again, how to be present. How to unlock from anxiety without letting go of my real needs. My phone is nearby and in signal, but usually off. That’s healthy too, right now. It’s a kind of technology break, which my battered and hyperactive brain is probably long overdue for.

I’m also bereaved in the presence of others who are also old hands at bereavement. It’s a peaceful thing. It feels curiously wholesome, even as grief and mortality are shredding sorts of events. Ronnie and all our late loved ones are very present in their very absence.

I could natter on about the wheel of life and possibly even spout some Buddhist wisdom about interconnectedness and emptiness, but to put it in words is to miss the point. It’s an experience. All you can really do with an experience is to be in it and allow it to be part of you.

So that’s what I’m doing. And there’s real healing in it.

For some things, no explanation is needed because, at root, none is… oh I don’t know… possible?

Anyway, I’m OK. I’m doing the things and being the me and accepting the limits (including transport) while appreciating the strengths (like interconnectedness) and feeling very secure and centered and remarkably peaceful withal. This is good. And if my phone is off, be assured it would be on if I needed it. Right now, the stars and the green and the peace are healing me, and I’m simply letting them. <3

Low-histamine shopping list and recipes

Isy / / adaptation, basics, food allergies, imp-possible, money, nutrition, recipes, self-care

Ladies and gentlebeings, here’s what I’ve come to after a 6 month period of, firstly, a strict diet of tapioca, carrots, butternut, apples, and chicken; then, careful reading about *tested* foods on *living* humans, plus extensive empirical testing on my own particular system. The fruits (, veg, herbs, and meats) of this work lies below. Foods that I currently remember as improving the histamine picture have a +.

Note: I’m focusing on what I *can* eat as part of a low-histamine diet. Where my diet is restricted for other reasons, I say so, in order to point out where there’s obviously something for others to explore.

I don’t mention higher-histamine foods nor do I go into the details of what makes a food low-histamine (which can involve mast cell triggering, histamine levels within the food, salicylates, non-food triggers that raise the background level of reactivity, whether fermentation or aging is inevitably part of the process – as with beef – and so on) because that’s a whole ‘n’other article, and a bit beyond my bludgeoned brain at the mo’.

Caveat emptor: we’re all a bit different. This is why empirical testing, tracking results for yourself, and being able to notice when things change, is so important. My list is basically ok in principle, but it won’t be right for everybody, and may not even be right for me in a couple of years.

Besides “everything organic” and “everything fresh”, the third leg of this mow-histamine diet is “everything freezable frozen”, because leftovers and meats start making histamines real quick. So, freezing and then defrosring in the microwave is the only safe way to go with yhese things.

I let stuff that’s fresh off the stove or out of the oven freeze up on the top shelf (usually atop the “buns” box) and then move it to its rightful place:

The magic lists

Everything, absolutely everything, is super fresh and organic. This is part of the deal with low-histamine foods, and I’m ever so grateful that it’s possible right now. (Thank you to the federal SNAP/Food Stamps system and to HIP, the produce-enhancing state funding system for low-income people, plus an outstanding local farmer’s market that works with these programs!)

Produce:

    • +Apples, fresh local low-spray or organic (by low-spray, I mean they get sprayed twice, once when the buds set and once when the fruit sets. I find I tolerate this just fine, as long as the apples aren’t sprayed for storage)
    • Fresh cider, UV treated to impede fermentation (when I’m not frail)
    • Blueberries, wild
    • Cranberries
    • Peaches, when not frail
    • Plums, most kinds, when not frail
    • Cherries, when not frail
    • Mangos (not bruised)
    • Spring onions (some people are good with sweet white onions but not spring onions, and some can’t tolerate any onions, so YMMV)
    • Garlic heads (as above)
    • Sweet peppers (I find red bells and bullhorn peppers easiest to digest)
    • +Asparagus
    • Cauliflower, if good (no black or yellowed spots)
    • Soft/summer squash: marrows, zucchini, yellow crookneck (scoop out seeds if currently fragile)
    • Different squash: delicata, pattypan (seeded as above)
    • Beet greens
    • Radishes (which I like to steam)
    • Celery


    I can’t eat leafy cabbages because my fragile thyroid poops out if I do: mustard greens, collards, chard, bok choy, napa, savoy, radicchio, kale, green and purple cabbages, and other winter-harvest yumminess! Check them out for yourself, as long as your thyroid and gut is up to the job.

    Protein:

    • Chicken, turkey, pork, lamb (frozen straight off the block; another farmer’s market item here) (NOT ground: that generates histamine, possibly from the extensive cell damage)
    • Eggs (from scratching, soy-free hens)

    I can’t eat lentils, beans, or peas due to gastroparesis, but you lucky so-and-sos who can might want to read up & experiment to see which ones are ok for you.

    Lipids:

    These have to be fresh and not have any whiff of rancidity. Since all my food is fresh now, these and my protein sources are my only source of lipids for my brain and spine:

    • Olive oil
    • Grassfed (or Kerrygold) fresh butter, not raw
    • Avocado oil
    • Drippings from cooking meats, frozen right out of the pan. These are *wonderful* for cooking veggies with!
    • Coconut oil (when not frail)

    Carbohydrate rich:

    • Rice (plain whites, basmati, or jasmine are all ok for me; brown and sweet rice are not for frail times, but ok in small doses at other times)
    • Sweet potatoes, any kind but Japanese (which I think I did to myself by eating them too often at one time! Darn it)
    • Tapioca/yucca/manioc, same vegetable; fantastic for a sluggish gut & delicious made with apple cider
    • Farmer’s market honey
    • Sugars: panela, jaggury, coconut (all of them unrefined & mineral-rich, so YMMV)
    • Beets – with greens (I use the stems to flavor soups and I steam the greens or drop them on top of a batch of stir fry; delicious!)
    • Carrots, lots, as they go with everything
    • Broccoli
    • Parsnips, if I’m not currently frail (they’ve got such good nutrition I keep them on my shopping list, but they’re the first to go if I’m not up to the mast impact)
    • Celeriac
    • Hard/winter squash: butternut, acorn, kabocha (NOT pumpkin or spaghetti squash)

    Rice is my only grain. Some do ok with sorghum or buckwheat or some other things, but it’s hard on me in anything but small doses & when I’m not reactive.

    Flavorings and spices

    I can do, almost all fresh:

    • Parsley
    • Basil
    • Dandelion greens
    • Cilantro
    • Sumac (this is dried)
    • Bay leaf (dried)
    • Rosemary
    • Sea salt
    • Mined salts: Kosher, pink salts
    • Garlic
    • Ginger
    • Turmeric
    • Cedar sprig (fantastic when cooking chicken or buttered black beans, not that I can eat the beans any more)
    • Cumin (when not fragile)

    Here’s the fun part…

    Recipes

    The web is international, and I try to work with that 🙂 Please be aware that, as my cooking was learned in US-origin households and restaurants, I cook by volume rather than weight. Measurements are noted accordingly. (I’m aware of the flaws in this system, so I use recipes that can accommodate the “fudge factor.”)

    These are much-loved ingredients I make ahead:

    “Ginger Fabulous”

    I almost took a picture of this, but it just looked brown on camera. It’s lovely earthy honey-colors IRL.

    • Peels from 4-6 apples (may freeze ahead)
    • Ginger x6-8 thumbs (a bit bigger than my smallish thumb, anyway)
    • Farmer’s market local honey, ~1/2 cup [120 ml]
    • Sugar (panela or jaggury for me; light brown or raw is probably good), same volume as honey
    • 1 pint [500 ml] cider
    • Optional: Dash of clove, if you’re ok with it

    Slice ginger to 1/8″ or less.
    Chop apple peels to about 3/4″ segments.
    Put everything in a good pot.
    Simmer until all the ginger is translucent, usually ~ 1/2 hour.
    Let cool.
    Try to keep enough for later; I find it hard to stop taste-testing.
    Uses:
    Use as is for preserves, or process/blenderise to rough texture for marinade, jam, or even hot drink if you don’t mind a bit of dessert in the bottom.

    “Super Greens”

    Here they are mixed into buns:

    • Parsley x6-8 bunches
    • Basil x3 bunches
    • Dandelion, Italian/less bitter (has spikier leaves), x1

    Chop parsley and the leafier part of dandelion greens to 1/2″ lengths.
    Pick basil leaves off stems and chop a bit smaller than that.
    (Wrap the stems in foil and keep in freezer for flavoring soups, as their flavors cook down delightfully.)
    Throw it all in a processor and chop very fine. (I have to go 1 head of parsley & equivalent of others at a time, because my processor is not that big.)
    Package up into ice trays, or in foil or paper by ~dessert spoon or ~50 ml sizes and freeze.
    Uses:
    1 of these dresses 2 to 4 scrambled eggs or omelettes, depending on taste.
    I take a batch and mix it with softened Kerrygold/grassfed (not cultured!) butter, to a ratio of 1 butter : 1 pressed-down greens by volume, and beat well into a super healthy spread. I refrigerate enough for a few days and freeze the rest. Way more yummy than something this healthy should be!

    “Isy’s elf-rising flour”

    This recipe is taken from alittleinsanity.com, but I removed the xanthan gum, use non-fungal risers, and make with organic flour ingredients. Its ingredients are friendly to systems dealing with inflammation and histamine problems. It makes buns, quickbreads, and muffins very quick & easy to put together. (I haven’t tried it with pancakes because I can’t limit my intake of pancakes sufficiently & don’t like to feel that sick, so doing without is my best bet rn.)

    This recipe uses weights because, for the most part, the ingredients are often packaged in these sizes so you just dump out a bag of each. Easy!

    • 24 oz [0.7 kg] brown rice flour, fine
    • 24 oz [0.7 kg] white rice flour, fine
    • 24 oz [0.7 kg] sweet white rice flour
    • 20 oz [0.6 kg] tapioca flour/starch (same thing)
    • 2+1/2 [37.5 ml] Tablespoons baking soda
    • 1 Tablespoon [15 ml] baking powder (I push this through a tea strainer to get all the clumps worked out. I abhor the taste of baking powder clumps)
    • 2 Tablespoons [30 ml] salt

    Blend carefully in a huge pot. I use both a paddle and a whisk, gently.
    Take the time to get everything *very thoroughly blended*.
    This makes a gallon plus 1.5 cups, or about 4 liters.

    Uses:
    This makes a forgiving dough, and will generally work out fine.

    2.5 cups [or about 750 ml] of flour will take:

    • 5 to 7 tablespoons[75-100 ml] of butter (maybe more; tell us if you try it?)
    • 1/3 cup [80 ml] liquid
    • 1/4 cup [60 ml] to 1/2 cup [120 ml] of sugar
    • Eggs, 1 to 4…

    If you use 1 egg per 2.5 cups of flour mix, it gives a texture suitable for scones or gf (American) biscuits.
    If you use 3-4 eggs per 2.5 cups of flour mix, it results in a soft, puffier texture with more volume, as for quickbreads [teacakes] or (American) muffins.
    Additions
    It adapts well: you can use water, broth, milk, or cider as the liquid, and can add as little as 1/2 cup [120 ml] or as much as 1+1/4 cups [300 ml] of diced chicken or Super Greens or wild blueberries – with or without some Ginger Fabulous – and still get a wonderful result.

    It bakes in 12-15 muffin tins (depending on the extras) at 350*F [175*C] for 16 to 20 minutes in my oven, or until there’s no steam in the scent from the oven / toothpick comes out dry.

    Here are chicken buns & blueberry teacakes in their freezer box. Defrost & warm by microwave on low for 30 seconds on top and 30 seconds on bottom.

    I’m still working out a recipe for lembas, but it’s only a matter of time. Buns made from this are light & crumbly all right, and certainly very filling!

Excercise intolerance, the invisible vampire

Isy / / activity, adaptation, basics, brainiac, imp-possible, PubMed, self-care

I’ve been walking for 2 1/4 miles 6 out of 7 days per week for a few weeks, and it stopped kicking my butt, woohoo! I could come home and go straight into another task. This took awhile; at first, I had to lie down with my calves & feet up on a suitcase for a couple hours & stay down for hours except for bathroom breaks, then I just had to lie down for hours, then it went down to half an hour of horizontal time, and finally it was fine.

So I bumped it up — like a fairly well-informed patient– by no more than 10%, or a whisker under 2.5 miles. Today was the first day. I had to lie down for a couple hours, and moving at all is brutal. I move like a centenarian who’s been sucked dry.

Dazed looking fellow with fangs
This outstanding cartoon is by JNL and is freely available under a Copyleft free art license

So, after realizing that yes, even though I can walk more than 2 miles, I *still* have excercise intolerance… I decided to look it up and learn more about it.

Further inquiry

You know me: I like primary sources. Doesn’t mean I always understand them, but I can usually glean the right vocabulary from primary science and improve my searches from there.

What a 1 hour scroll through the National Library of Medicine turned up today is that excercise intolerance is usually related to specific kinds of heart failure (already ruled out), certain profound lung diseases (definitely not), certain complications of diabetes (nope, thank goodness), and mitochondrial illnesses usually due to genetic variations that leave them struggling (definitely something I’ll check again, in light of this new info. I’ve got those geneticgenie.org results somewhere…) It can also go with POTS, postural orthostatic tachycardia, which I have a variable case of.

So what is excercise intolerance?

As I understand it currently, excercise intolerance means that, instead of excercise building muscle and oxygen-carrying capacity, exercise chews up tissues and reduces oxygen-carrying capacity.

Much like what happens when the vampires have been at ya.

Edvard Munch’s colorful take on vampiric prey, massively stylish as ever.

It’s very uncommon in the general population, and many people think they know better than to “believe in” it.

No wonder. It’s completely counterintuitive! How can excercise possibly make you weaker, sicker, and more broken-down?

Because some of us are just that lucky. Or something.

That which doesn’t kill me…

Makes me seem weirder and even harder to relate to.

It also generates inflammatory crap much faster than the impaired body can clean it out, which means more pain, more limited range of motion, and longer recovery time.

Yep, it’s fun to have! XD

It used to be that, once I broke the 2-mile mark, the only symptom I’d get after too much excercise was simply feeling like I’d had too much excercise, and a couple of Advil and a couple of good night’s sleep would take care of it. There *was* such a thing as “no more excercise intolerance”, and it was lovely.

I didn’t realize there were also such wide degrees of excercise intolerance. *This* doesn’t feel like I just did too much exercise and all I need is a little time. This feels like I’ve had an inflammatory surge, a mast cell activation episode, like my bones are charring gently, and like everything is about 10 times harder.

Now I know: Excercise intolerance can keep up! (Foul expletives mumbled under the breath.)

In the interests of data collection (and getting physician attention), I’ve pulled out my pulse oximeter and will check my oxygenation and pulse rate before, during, and after my walks.

Data! Yummy data! Nom nom nom nom. It’s not a cure, but it might help in the longer run. — Walk. The longer walk, haha.

 

First aid kit – homeopathic side

Isy / / basics, brain care, CRPS knock-on effects, meds/drugs, neurotransmitters, nutrition, radical presence/radical acceptance, self-care, supplements, what works

I’d like to eschew certain arguments altogether. This is not about dissing or justifying one approach over others. Every one of us has to figure out what works for our own individual selves. Anybody who feels they have the right or duty to argue otherwise, please read the last 3 paragraphs first. Thank you!

My homeopathic first aid kit

I used to keep just Arnica montana and Symphytum officinale around. As an old trauma nurse & athletic over-doer, dealing with sprains, bruises, and occasional bone bruises & minor fractures was the main point, and these two remedies are outstanding.

Then Zicam became over-the-counter shortly after Oscillococcinum hit the market during flu season, followed a year or two later by the blend Cold Calm, and winters got a lot less snurgee. So that was another win. It was interesting to finally care whether a virus came on fast or slow, because until then, it didn’t matter, because I was in for 10 to 14 days of aching yukiness either way. (Generally speaking, if it hits fast, it’s flu; if it comes on over a day or three, it’s a cold.)

It was good to be young! And healthier! XD

The current cabinet

Now I’ve got a lot more to deal with, including lower and fewer possibilities for meds, herbs, and food. Homeopathics are taking up more of my “treatment options” space as other things fall away and conventional therapeutics have less to do for me.

Here’s my current lineup:

Pain

Body pain: Arnica, 6c or 30c, or both starting with 30c and going down.

Bone pain*: still evolving this solution. Currently isolating effects of Symphytum o.(absolutely brilliant for previous fractures and bone aches in early CRPS) vs. Bryonia (commonly used for my type of bone pain) vs. Calcarea flourica (helped with aching bones 15 years ago, on occasions when Symphytum wasn’t helpful.)

Muscle cramps and spasms: Magnesium phosphorica, known as Mag phos by its many fans, 6c for pre-spasm tension or sudden onset, 30c for deeper or more persistent cramping.

Labeled as a remedy for menstrual cramps, I have found it to be outstanding for my skeletal muscles and intestinal muscles as well — as long as:

  • My serum magnesium is ok (I supplement with chelated magnesium twice a week, since my body plows through this electrolyte at a consistent rate);
  • My other electrolytes are ok, including calcium, and my vitamin D is high enough to regulate the calcium properly;
  • My hydration is adequate. If I can’t experience thirst normally, I blink and feel for discomfort in my eyelids, or pinch up the skin on the back of my hand and give it 1/10 of a second to return to flat. (I need to stay in the upper level of hydration for the sale of my brain & spine — as well as my kidneys, which work hard to deal with my meds.)

Note of caution: Muscle spasms are not necessarily a simple fix. Start with the simple thing and work out what your underlying tendencies are: dehydration is usually easy to sort out, and you’ll know if it helps within a day; magnesium/calcium/electrolyte levels need a simple blood test to discover; once you’ve got good info to work from, you’ll know if your next step is supplementation, medication, homeopathy, or a call to your doctor.

So, please, start with getting good objective info so you know what your particular system is likely to need when your muscles cramp. There is definitely such a thing as too much dietary magnesium, so throwing magnesium chelates at spasms can make things considerably worse if that’s not the underlying problem!

G.I.

Colic & abdominal cramps: Mag phos for the win! See above.

Constipation: As I’ve recently been reminded… first, call your pharmacist, and ask about your med side effects. Sigh, so easy to do, so hard to remember to do.

Homeopathically, Sepia and Alumina took turns being helpful, but didn’t complete the turnaround I needed.

In the end, getting off a key med, while also minimizing histamine release in my gut, while also supporting digestion with a prescribed suite of digestive enzymes and some Chinese herbs, while also eating tapioca with nothing in it but a bit of coconut sugar nearly every darned day for 6 weeks… turned that intransigent problem right around. Plus, Mag phos for the abdominal cramps.

This is a 5-star example of a multi-front approach: med revision, diet revision, toxicity reduction, and a combination of supportive measures: prescription, dietary, herbal, and homeopathic.

Life, at this end, isn’t simple. Simple solutions often aren’t enough. That’s why I value the “multi-factor” approach: nothing works that well in isolation, so I often wind up getting everything possible to head in the desired direction.

Brain

“Heated” brain feeling & stormy sensory sensitivity: still best with herbal concentrated lemon balm, which is effective & reasonable. Good homeopathic fallbacks (for me) are Silicea or Kali phosphorica, depending on accompanying feeling of irritability (Silicea) or dullness (Kali phos.).

*Bone pain treatment note: The bone pain started up as Savella cleared my system. My bowels got back into gear over the same span of time. This week, I trialled a small dose (12.5 mg twice daily) of Savella to see what it did; in 2 days, the bone pain decreased by ~80% — and my bowels shut down at the same time, leaving me with the poor sleep, delayed recovery, body pain, and joint pain that comes with the inflammatory bloom that produces.

I might give it one more shot, but honestly, there was no other change involved and I hate torturing myself.

I’ve learned what it’s like to survive without a working gut,  and it’s too hard. The knock-on effects of pain, fog, and allergic activity is brutal.

So, my current personal project is to figure out another way to manage bone pain. It’s just awful, but a stalled gut is still worse.

Diet and nutrition has brought me a very long way forward, but at the moment, there’s not much more it can do. I’ve had a squeaky clean diet for years, but now it’s so carefully tuned it could probably hit high C. This may change, and if I have to do something else, I’ll figure it out when the time comes.

Pharmaceuticals have come a long, long way, especially these amazing mixed-SNRI neurotransmitter supporters. However, between my genetic tweaks affecting med assimilation and the natural effects of biochemistry, there isn’t an obvious way forward here, now that Savella has washed out for me.

Herbs are so built into my life that it’s a specific mental effort to think what else I could try here. Given that herbs A. Require frequent dosing and B. Do have side effects and I’m exhausted with side effects right now, that currently there’s nothing herbal I know of that I’m willing to try.

Homeopathics have a history of being more predictable, consistent, reliable, and safer for me than herbs and pharmaceuticals (though I owe my life to pharmaceuticals and am not dissing them, just facing another tough reality). There are several possibilities to explore, so that’s where the next step leads me.

Onward!

Felix the Cat with bag of tricks and scientist

Last 3 paragraphs

My own approach is absolutely comprehensive — pharmaceutical, nutritional, dietetic, physical, psychological, mental, herbal, artistic, behavioral, and energetic techniques all play a part, and there’s peer-reviewed science behind over 90% of what I do. Every single intervention gets tested on me — and assessed for benefit and drawbacks — before being incorporated, and gets retested at least yearly.

I’m a diligent empiricist; as I’m responsible for exactly 1 clinical case, that is the most rational approach. Empirical science is the only method of scientific inquiry which consistently considers the individual case.

Sarcastic Sister adds:

Anyone who sincerely & totally refutes the value of homeopathic remedies is welcome to borrow my body for a week or two & see what works for themselves; I’d be happy to borrow theirs while they figure it out.

New set of wheels

Isy / / activity, adaptation, basics, marathon, radical presence/radical acceptance, self-care, what works

I walk everywhere I need to go. I finally tried the bus, and honestly, it could have been worse — but the base of my spine is still not prepared to put up with more than about a mile of that banging.

The problem with walking is that my legs are getting really good at “Burning Bones” — one of those trippy CRPS nerve games where it feels like the bones themselves are covered in & consisting of fire.

I used to wonder what burning bones were like and felt lucky for not having experienced it — and highly inclined to keep hammering massive doses of D3 to keep my blood levels in normal range. (D3 helps keep calcium in the bones & teeth, where it belongs, and prevents excess calcium from causing nerves to misbehave, among other things.)

Well, this clears *that* up! I know exactly what burning bone pain feels like now. But still, I’m well aware it could be so much worse: I just get little yellow flames, not big blue-based barn-burning flames. Those are definitely worse. I don’t know if I could keep walking through big blue flames.

Do I walk through the little yellow ones?

Go on, guess.

Shows woman flat on floor, with woozles coming out of her head
Creative Commons share-alike attribution license, credit livinganyway.com.

Carrying the bag I use as a purse adds a few pounds to the load on my legs, hips, and knees, and a bag or two of groceries adds about another 10-12, however carefully chosen they are for weight.

Plus, I’ve been slinging those from my shoulders — better than a backpack, which puts the stress right across the anterior nerve plexus for the shoulders, but — as we say about little yellow flames for bones — is, um, less than ideal.

I have tried every grocery cart conceived of in the last decade. The vibration on my hotwired palms is like hanging onto a working jackhammer covered in razorwire. (I don’t recommend doing that, however much you want to see what this is really like.)

I stared longingly at jogging strollers all year.

I designed my own grocery conveyance, priced the parts, and realized I had just designed a jogging stroller and it would cost about as much.

I haunted Craigslist and Freecycle for weeks, until an add for a Schwinn jogging stroller popped up.

Shows cupholder bracket affixed to handle of stroller

Is that a cushy push or what? ?

And, guess what, it has pockets! — I mean, cupholders! (Cupholders are definitely the pockets of non-clothing items, say I.)

For once, I kept myself from saying *just how much* this means to me and why, because who wants to hear sob stories, right? I handed over the very reasonable sum, thanked him 4 times but not nearly enough, and sailed away.

Even though my legs are starting up the burning bones awfully quick today, in every other respect I feel like I’m walking on air.

I can pick my own *groceries*! OMG!!! And *get them home* with minimal further damage! WOOHOOO!!

Life is good.

Thank goodness for that sweet family who let this go ❤, and for craigslist.org for linking our complementary needs.

Planning ahead

Isy / / adaptation, basics, brain care, critical thinking, food allergies, imp-possible, meds/drugs, radical presence/radical acceptance, self-care

I’m getting an allergy panel in a month or so. This means I have to be off my antihistamine for 5 days before.

THAT means I have to start tapering off ~2 weeks ahead of time; 3 weeks would be safer, but I don’t see how to endure over 3.5 weeks total with that level of obnoxious symptomatology and brittle physical fragility. 

That said, I *really* want the data.

You might ask, “Why?” (Or possibly, depending on how familiar you are with the twisted satire that is my health record, “WhyTF?? Are you *crazy*??” As if you didn’t already have a definite opinion about *that*! ?) 

Well, here goes…

Flash back to 2013

Years ago, under the tutelage of a late & very lamented friend who Knew Mast Cell Stuff like I know the back of my hands, I finally (in 2013) did my empirical testing around whether mast cell & histamine activation-like signs & symptoms I was struggling with, would respond to treatment. 

Step 1: reducing & eliminating competing problems

I had already gotten excellent neurological & biofeedback training, which worked well for many things (Go, Pain Psychologist Dr Faye Weinstein! I got tremendous and lasting benefits from my work with her. Highly recommended. “Stabilize, stabilize, stabilize.”) While I had excellent results from the neuro stabilization, it didn’t make much difference to the allergies, a particular “flavor” of brain fog, food & digestion issues, or the usual allergy circus of itching facial orifices & random urticaria.

The histological issues persisted most obnoxiously. This was 9 years ago when the mast cell activation diagnoses were not as well developed, and at a time that, though I had access to an enormous pool of well trained doctors, I was already up to my hip-waders in the maximum number of appointments I was able to keep. 

What do you think? Pursuing testing and inquiry into a set of issues that were still widely considered to be a matter of hysteria? — For a middle-aged woman with pain diseases and 60 extra pounds of weight, do you think *that* would have been a good use of my limited time? 

Smh!

So, I went empirical on it.

Two methods of science: “empirical” and “scientific” method

Both methods are scientific, in that they require diligent examination & limiting of variables as well as testing, retesting, and recording results accurately. 

(But hey, that nomenclature isn’t confusing, right? <eyeroll>)

It boils down to this: 

Empirical method: what works in this case in particular? 

Scientific method: what’s generally likely to work in many cases?

The empirical method of science is brilliant on a case-by-case basis, there’s nothing better; but avoid making assumptions beyond that case. The scientific method of science depends on hundreds, ultimately thousands, of cases, and from all those together, it generates statistical probabilities about what’s *likely* to work under certain circumstances as a general rule. It’s much more widely applied, but explicitly *not*  individualized.

This is why, as someone dealing with multiple rare issues, I test everything ~3 times on myself before deciding if it’s a good idea for my particular situation.

Now the next section will make more sense.

Right med, right dose, right time

I tried several antihistamines to see which one helped me the most. 

Then I experimented with dosing to see how much it took to get me functional most of the time. 

Then I experimented further with once-daily dosing, or dividing the dose in two and taking it twice daily. It had better results (and no “oog” feeling) if I took it twice a day.

In the end, I wound up on one of the top 3 meds for mast cell/histamine issues. I also wound up at the common dose for those with a solid case of Mast Cell Activation Disorder. (The twice-daily dosing was my own special twist, but I’ve since learned it’s not that uncommon among “masties”, as people with mast cell dysfunctions refer to themselves.)

Without any further ado, my doctors added MCAD to my list of diagnoses.

(As with every med and supplement, I continued testing it every 6 months or so, backing off the dose and looking for the minimum effective dose, but stopped doing this because of … we’ll get to that.)

But, frankly, a differential diagnosis doesn’t yield enough info to change anything causative. If I can nail specific allergens — or culprits — and receive treatments that can actually reverse this ghastly crap, that would be *great*!

So, I really want the data.

Histamines & tendon problems

I stopped trying to cut down on the antihistamines a couple of years ago, because I couldn’t bear any more injuries that threatened my mobility.

“Mobility? Huh??” I hear you ask.

One of the things the antihistamine helped with was tissue-tearing. I didn’t expect that, but was delighted not to be twisting my ankles on uneven ground or sudden jumps away from traffic, then having to crawl or scoot home because hopping on 1 foot when your tendons don’t work is a terrible idea.

As I thought about it, it made sense though…

Histology review:

Q: What happens when your histamines are active?

A: Among other things, inflammation in and around your cells.

Q: What happens when cells get inflamed?

A: Among other things, cell walls get weak and leaky.

Q: What happens when connective tissue cells get weak?

A: They tear more easily. 

Ah hah!

So, yeah, maybe MCAD could weaken my connective tissue after all — especially because, for one thing, I started out hyperflexible, which is a setup for these kinds of problems; and for another thing, the fibrosity of fibromyalgia has made my connective tissue more brittle & easier to tear.

Ducky! Another hat-trick! ??

Back to the testing

This is the test where they put a grid on your back and scratch or inject tiny amounts of different stuff into your skin. In about 20 minutes, whatever you’re going to react to should be a nice hot ruddy lump, technically a “wheal”. 

For this to happen, your body has to have nothing interfering with histamine reactions — in other words, no anti-histamines.

Since the antihistamine I wound up on has a long half-life, I have to be off it for 5 full days before testing.

Prepping for the test

Because going from full dose to no dose means I can barely get out of bed safely (see “Histamines & tendon problems” above), I have to taper down. I’ve done this before, usually to eke out my meds when my supply is running late. It’s familiar territory. 

Experience tells me that:

  • I have to taper at a rate of no more than 12.5% of my daily dose at a time.
  • I’m best off (in this terrible sitiation) stopping for 3 days at each new dose before the next step down.

This means that it would take 20 days to taper off to 0 (shorting the last step to 2 days instead of 3) *and then* 5 more days at 0.

Doing this with tissues crying, “Go on — tear me!” And every bite of food, breath of air, bit of furniture, bump in the sidewalk, or tussock of grass all giggling in evil tones (so to speak), eager to hear my muffled yells.

Yeah. Tasteless spoofing aside, that’s not a great situation to spend 3.5 weeks in.

Then, of course, as soon as I can horse down my meds again, it’ll be several days before I qualify as human.

Then, about another 1 to 3 weeks before I get back up to baseline function.

My Halloween costume will require very little makeup for me to pass as a zombie, so that’s one bonus.

What a month-and-a-half to look forward to!

Is all this really necessary?

Well… I really, *really* want the data. If this is at all reversible, wouldn’t that be worth a few weeks of howl-worthy endurance?

Obviously, yes… but I don’t think I could keep at it for over a month. I’m good at enduring, but I’ve got hard limits.

I really, *really* want the data.

Managing towards the best possible outcome 

My doc prescribed me some prednisone to take in order to avoid winding up in the hospital over this. I look at the results of my last round of prednisone — the change in my face and the truly shocking stretch marks (which made my dermatologists blanch and leap back, no kidding) — and I consider this truly last-ditch stuff. Beats nothing, I guess. It might keep me out of our ER.

There are dietary issues to consider. (What follows is a brain-dump from my years of querying doctors and reading, as well as my empirical food testing.)

Food matters: boost the signal

I know that the system being tested (mine) can respond more truthfully if it’s familiar with the molecule being tested. For instance, I haven’t eaten gluten in years, so this test might possibly come up negative to that. 

Doesn’t mean that, the next time I walk past a bakery without my mask on, I won’t get an itchy swollen throat and everything won’t turn white for a bit, it just means my body had enough of a break to stand down, and will need to re-arm.

With that in mind, I might grab a couple of saltines before I go in. If I could calm the gluten circus enough to just be safer walking around, that would be awesome.

Food matters: reduce the noise

I’m getting off the aged and fermented food, because that makes such a dramatic difference in my pain and swelling. This includes seafood and beef and anything packaged (look up what creates histamine in food).

Despite that, I’m making exceptions for things which I want to make sure my body has experienced in the month before testing — nuts, bananas, stone fruit, fish, grains in addition to glutinous ones, even beans — although that’ll be a period of gastroparesis hell, but this system must not be “bean-naïve” for the test.

Because I really, *really*, REALLY want the data. This is the kind of info that could change the course of my life for the better. 

For that, I can get through some serious struggle. 

Ramping down steeper

I’m going to go down 12.5% of my dose every 2 days, instead of 3. This will shorten the ramp-time to 2 weeks. Recovery might be a little longer, but I can maintain attention on what I’m doing this for, for that length of time. 

Until then, I’ve got a lot of cooking to do and a freezer to stuff with things that 

  1. Won’t hurt me more than absolutely necessary, and
  2. Will include exactly what I think I need to be exposed to, to maximize the value of the test. 

If you’re in a similar situation, remember that your mileage may vary. Ask your own docs, and then ask their nurses the same questions.

The differences in the answers tend to reflect the wholism that nurses work with, a nitty-gritty pragmatism that rounds out the more optimistic notional-ness that doctors can succumb to. Both views matter.

For only the second time in my life, I might do actual menu planning. I’m usually more of a “what’s fresh? What’s cheap? What’s safe? What’s appealing? Throw it in the pan” kind of cook, but that takes brain. I’d like to insulate myself from a potentially very brain-free near future and reduce my frustration over the coming month. Having easy-to-grab, safely frozen meals sounds fabulous.

Here’s my plan…

The grocery order just arrived, so if you’ll excuse me…

The freedom of masking

Isy / / basics, Covid-19, perspective, self-care, tools and techniques, what works

Two years ago, if I were walking down a sidewalk next to trucks belching diesel, I had to breathe shallowly and mentally plan on the nausea and neuro-huckery that was likely to follow.

When I went shopping at Big Y — well, I couldn’t, because the massive bakery displays at both ends of the store could wipe me out in a heartbeat. 

I was sadly giving up my Goodwill/Salvation Army pillaging habits because the unquenchable stench they saturate the stuff with made me so sick it was harder and harder just to walk in there, and my de-stinking magic stopped working on fabrics. Sad sniffle… I used to get half my furniture from there, and most of my better clothes.… 

I considered getting surgical masks, but I already knew how many leery looks & disparaging comments that public mask-wearing used to provoke. I try to avoid getting leery looks, because people are a lot less likely to be pleasant or helpful towards someone they’re leaning away from.

Then The Modern Pandemic hit, and everything changed.

Nearly two heartbreaking and traumatic years later, the message that this is the new reality is starting to take hold; testing and explanations of what makes a mask effective is available from legitimate labs and reputable sources; and I’ve made myself 2 custom-fitted, Isy-safe, well-made masks that are easy to clean and dry well overnight. 

Colorful though they are, they just don’t stand out any more! Masks are part of the New Normal, and generally provoke smiles and friendliness instead of the opposite.

So, on today’s walk, I wound up surrounded by fuming traffic — and put my mask on. No problem. Then I went shopping at Big Y and went from end to end of the store — with my mask on. No problem. I was too tired to go to Goodwill today, but when I do go there, I put my mask on — and I don’t smell a thing until I get everything well outside and take my mask off. (I can still get the smell off of hard-surfaced things.)

Mind you, it’s not like my own breath is a bucket of roses (!) — but it still smells way, way better than diesel, and it doesn’t make me sick! 

It took awhile to realize it, but masks really set me free and make my *whole* world (not just the pandemic aspect) much, much safer and more comfortable to be in.