blimix: Joe on mountain ridge with sunbeam (Huckleberry Mountain)
I made a video. This is a sympathetic love letter to all my chronic illness / rare illness / zebra friends.

Zebra at the Doctor

I appreciate those doctors who listen to their knowledgeable patients. If you find one here*, they're a keeper.

* One guess which country this takes place in.

(Also, insurance companies ensure that doctors have no time to listen to you. We need single payer health care yesterday.)
blimix: Joe on mountain ridge with sunbeam (Huckleberry Mountain)
Early this morning, I lay awake ruminating. I would usually try to distract myself by focusing on my breathing, which has a mediocre average return. Instead, I acknowledged that my brain was trying to keep me safe by imagining what I would do in bad situations. I thought, "Thank you, brain, for protecting me. But I need sleep more than I need planning." Then I paid attention to how each breath felt, while counting on both the inhale and the exhale. I was back asleep before I got to ten.

I've read that it makes more sense to view a person as a collection of selves than as a solitary self. Maybe the self that ruminates prefers not to be dismissed. Give it some appreciation and validation.
blimix: Joe by a creek in the woods (Default)
Hey, asthma sufferers? Montelukast (Singulair) has an understated problem.

This came to my attention from a friend who suffered it, and it turns out (anecdotally) to be far more common and widespread than the medical community admits. Montelukast is causing chronic pain and mood problems.

This wasn't on the label originally. While it would have been nice for the initial studies to catch it (but that would have involved doctors listening to women, so good luck), what should have happened later is that the FDA collects enough evidence to make them put a warning on the box; then doctors notice and educate themselves, and are cautious to prescribe it, and they carefully watch for side effects in case the patient needs to discontinue the medication.

What actually happens, in general, is that even good doctors have no leeway to be so watchful. Insurance companies and hospitals have them rushing patients through, back to back, just to stay afloat (or to drown in debt a bit less quickly).

What actually happened, in particular, is that the warning was added to montelukast boxes in March of 2020: When all the doctors had something else on their minds and their schedules. Even the most privileged and attentive doctor would have missed that.

Please beware the effects of this drug.
blimix: Joe leaning way out at a waterfall (waterfall)
There is a practice of mindfully immersing one's self in woodlands, which is translated from Japanese as "forest bathing". It sounds like something I certainly ought to be doing. A year and a half ago, I signed up for a guided forest bathing walk quite some distance away, then overslept. Today, Zimarra and I took a guided forest bathing walk at Five Rivers with two other guests. I was thrilled to finally get to do this.

I'm sure you can look up instructions for forest bathing anywhere. I am taking notes from today as a memory aid. A summary of notable instructions:

As when meditating, try to stay present in the present. If your thoughts wander, gently note that, and return them to what you're doing. Choose a direction to face. Soften your vision, to look at the whole scene rather than focus on any one aspect. Breathe deeply a few times. Turn 90°. Notice what you're feeling: The wind, the ground, feelings inside you, etc. Breathe deeply some more. Turn 90°. Listen to what's around you. Focus on the nearest sound for a few breaths. Focus on the farthest sound. Turn. Breathe some more. Pick up a soft evergreen twig to hold and feel. As you walk, note your experience of your surroundings. Linger at whatever catches your interest. Try looking and listening for anything moving. Stand still, eyes closed, and make a mental map of the sounds around you. Continue walking slowly, using all of your senses.

I've left out a few instructions that were too "woo" to be meaningful to me. I'd categorize "Note your surroundings, such as the sky, experiencing you" as woo, but our surroundings included a deer which did in fact notice us.

Our guide had come from a background of leading children on sensory walks. She instructed us to take twigs from the old Christmas trees lying on the lawn as bird shelters. When she suggested that we carry and feel them, I knew that they were stims.

The nearest sound was the wind rushing through my hat and against my ear. The farthest was the wind in the trees. Focusing on "the wind" twice felt like it was following the letter of the instruction, but not the spirit. I switched my focus to the birds at the feeders.

Unprompted, I ungloved my hand to feel moss on apple tree branches, ice on Sunfish Pond, and soft plants. Through my boots, I could feel the frozen ground under a quarter inch of squishy thaw.

Just as we started our mental sound map, a huge wave of wind rolled in from the meadow and washed across us. It felt dramatic.

I used "the present" as my framework for handling distraction. "No, Joe, that was in the past. Pay attention to the present." "No, Joe, you don't have to memorize that. You can look it up later. You don't have to plan that other thing. Those are in the future. Return to the present." "No, Joe, you don't have to find a way to word this for your blog. That's in the future. Actually, you're describing and focusing on your current experience, which probably counts as mindfulness. Okay, go ahead and do that."

As we finished, our guide handed us further information. When I thanked her warmly by name, she glowed.

The handouts included a link to an audio recording of a guided sensory walk through a forest. I'll give it a try sometime.
blimix: Joe on mountain ridge with sunbeam (Huckleberry Mountain)
I know an astonishing number of people suffering from dysautonomia and tachycardia. I learned some stuff from this article (maybe y'all know it already): Mostly about the importance of distinguishing between tachycardia from POTS and from an adrenaline surge, because those are dealt with differently. I wish the tips didn't start with exercise, because I think everyone's getting inundated with, "Have you tried exercise?" (I've been guilty of this too. Sorry!)

On the subject of not-exercise, I've read the "I rested my way to recovery from long COVID" essay, and it's tempting to put stock in it, but there was nothing to distinguish that method of recovery from regression to the mean. That is, the author might have just gotten better in time, regardless. Or they might have had a better chance to recover because their life was privileged enough to allow them to rest. This is why we need data from controlled studies.

Edit: While we lack controlled studies, we may as well pay attention to experts and anecdotes suggesting rest.
blimix: Joe dressed as Weird Al in gangsta pose from Amish Paradise (Amish Paradise)
Aside from all the other reasons to despise American health care (mostly involving predatory insurance companies; privatized health care; inadequate care for women, gender nonconforming, Black, fat, disabled, and other marginalized populations; abuse of medical professionals by schools, hospitals, and senior professionals), I am once again reminded to be enraged at the number of patients given a "diagnosis" of IBS (which for practical purposes means, "Something's wrong with your gut. Damned if I know what!") when they have specific, diagnosable, treatable pathologies.

SIBO. Bile reflux. Reduced FGF19. Gall stones. Biliary atresia. Pancreatitis. Exocrine pancreatic insufficiency. Crohn’s disease. Ulcerative colitis. Celiac disease or gluten sensitivity. Food allergy. Endometriosis.

You can look up symptoms and find all these causes online. But the doctor has fifteen minutes to hear you out, try to remember anything from their training that rings a bell, then throw up their hands and say, "Sounds like IBS. Take an antidiarrheal, eat more fiber, and lose weight (because the insurance company mandates that we tell you to, or because I'm an asshole). Next patient!"

Most of this stuff is treatable with surgery, medications, or even particular strains of probiotics. Yet people are unnecessarily living with life-altering symptoms because an awful lot of us don't have access to medical care meeting even a basic standard of quality.

Things that can go felch a dysenteric tortoise before expiring in a conflagration: Capitalism, puritanical esteem for suffering, discrimination, the HMO Act, and Citizens United. (Also Richard Nixon, if we can briefly resurrect him for this purpose.)
blimix: Joe on mountain ridge with sunbeam (Huckleberry Mountain)
This is better (and more immediately useful) than anything else I've read about stress relief:

Brené Brown's podcast on "Burnout and How to Complete the Stress Cycle" with Drs. Emily & Amelia Nagoski

I read the transcript because I don't have Spotify. It is well worth it, and I'm putting their book Burnout on my to-read list. Meanwhile, I'll provide a summary of the summary.

Basically, dealing with stressors is not the same as eliminating stress. Quick ways to complete the stress cycle and reduce the physiological stress response include:

* Physical activity. Exercise, running, dancing, a long walk. Or tense every muscle in your body very hard, and hold them until they beg you to stop; then completely relax, lying down.

* Deep, long breaths for 90 seconds. Breathe out all the way.

* Positive social interaction. Being with someone who makes you feel at home. Or even just complimenting a stranger.

* Laughter. (Good laughter. Not deliberate, social noise laughter.) Even reminiscing with someone about a time you laughed hard can help.

* A warm hug in a safe and trusting context. At least 20 seconds, until you are relaxed. (Upright, not leaning on each other.) This releases oxytocin. So does a kiss of over six seconds.

* Have a good cry. (If it goes too long, end the cry by focusing on all of the physical sensations of crying rather than the thing that is making you cry. Five minutes is good.)

* Creative expression. You can put your emotions into your creation. Carrie Fisher said, "Take your broken heart and make it into art." You can also think your way through a story that gives you power or closure. (See the podcast for a clarifying example.)

Important but not mentioned there is to immerse your face in cold water. (This activates the diving reflex, resets the sympathetic nervous system, calms the body, and halts anxiety.) If you can't do that, a cold compress or a plastic bag of ice water on the face or the back of the neck may work.

See also progressive muscle relaxation, which is gentler than the full body clench.
blimix: Joe leaning way out at a waterfall (waterfall)
This is another of those times that I notice all the stuff that I've typed up quickly for Facebook (as posts or comments), none of which individually fit the longer, more considered format that I prefer for Dreamwidth. Here's a compilation. Behind a cut. )
blimix: Joe leaning way out at a waterfall (waterfall)
After more than half a year of frequent insomnia that's finally starting to abate, here are my collected tips for sleeping, which (if I recall) are more comprehensive than any I've seen online:

Blue light (even as part of white light) keeps your body in daytime mode. Avoiding bright lights and screens for the last 90 minutes before bed is good, but often hard to arrange. Wearing orange goggles that block blue light is much easier, and works on all the ambient light too. Also turn your computer screen brightness down at night. Set an alarm to remind you to put on the goggles.

While lying in bed waiting to fall asleep, try slow, deep, mindful breathing. Pay attention to how each breath feels. Count your breaths. If you get distracted, just notice that without judgment, accept it as part of the process, and resume counting. I'm less likely to get distracted if I count on both the inhale and exhale. I also visualize the numbers forming, with a flame tracing out each number on the inhale and reversing to erase it on the exhale. That keeps my mind too busy for intrusive thoughts. It's okay if you have to keep starting over! (Relatedly, 4-7-8 breathing did nothing for me, but it has helped others, so feel free to look it up and try it.) If you count to 60 and still aren't asleep, try something else.

Your mileage for this one may vary, depending on your body's chemistry and digestion; it's what I've had to do: No caffeine from coffee or tea. (Even decaf coffee has too much. Second pot tea is okay.) No chocolate in the afternoon. (Edit: See this follow-up post about decaffeinating second pot tea.)

Diphenhydramine (Benadryl) works as a sleeping pill for some people. It didn't work for me, but I used a different, prescription antihistamine (hydroxyzine HCl). Once my new sleep cycle was well established, I went off it. Sleeping pills can build dependencies, such that you can't sleep without them if you use them consistently, but it only took about three nights before I was okay to sleep without them. (I took advantage of a long weekend for this.)

No melatonin: It can badly disrupt your sleep cycle, in the long term. (Karen told me this, and my doctor confirmed it.)

Exercise in the middle of the day, so that you're tired enough to sleep. (Exercise right before bed keeps me up, and if I exercise in the morning, I've already recovered by bedtime.)

Use earplugs that work and are comfortable. (I use Mack's Maximum Protection soft foam (33 dB) orange ear plugs, found at the supermarket.)

Separate blankets/sheets/covers in bed, so that other people and animals aren't waking me by tugging them.

A drop of lavender essential oil on a tissue placed near the head of the bed. I keep it enclosed in a container during the day, and add another drop every few nights. I leave it in the container, just opening the lid, to ensure that I don't get the essential oil on my skin. (A friend recommends lavender hydrosol, which is cheaper, or an eye pillow stuffed with dried lavender.)

A sleep mask. This might be supplemented with a pillow on top of your head, to further insulate your eyes and/or ears from your surroundings.

A small, early dinner. Lying down while still trying to digest is just uncomfortable enough to disrupt sleep.

Magnesium cream, applied after each shower. Magnesium is needed to recover from stress, and is used up by stress. It is absorbed better through skin than by eating. I've tried magnesium supplements, epsom salt baths, and epsom salt foot baths. The cream seems to be working most reliably. (I apply it to the legs, because areas that sweat can get slimy with it.) You can make your own goop out of epsom salt, water, vegetable oil, and glycerine.

Notice which thoughts are intrusive and keep you from sleep. Try to notice and shut down those thoughts, by redirecting to other thoughts or to breaths, when they happen. I tell myself stories, reliving happy memories and favorite films.

Adjust the room temperature and covers. You can subtly be too cold or warm to sleep, without feeling uncomfortable.

Change sleeping positions. Turn over, or remove or add a pillow.

Use a ritual for just before sleep, that involves already being in bed. I play online Boggle (with orange goggles on, lights off, and screen brightness all the way down) until I'm drowsy, and can then just put it away and drift off.

For waking up: Pound a tall glass of water first thing in the morning. I add bottled lemon juice until it is noticeably sour. (Apparently, some people swear by squeezing a third of a lime into a glass of water every morning. I can't be arsed. And who cuts limes into thirds, anyway?) A bit of exercise in the morning helps, too.
blimix: Joe by a creek in the woods (Default)
I just found out a bunch of cool stuff at today's Mental Health Subcommittee meeting, and thought I'd pass some on.




Upper Hudson Planned Parenthood now has a program for in-house, short term (up to one year*) treatment of depression and anxiety. Basically, they were seeing these a lot in their existing patients, and figured, "We're already good at providing stigmatized care, and our patients trust us. We're in a great position to provide another type of personal, stigmatized care." (Also, despite referrals, a lot of Medicaid patients will only visit a single physical site for health care.) I think they said they still apply sliding scale charges, so if you don't have Medicaid, you might still be okay. Extra benefit: Some mental health providers don't see past nonconforming gender identities: "Oh, that's your problem right there!" So counselors at PP may be much more useful for gender nonconforming folks. (Counselors: They're hiring!)

* Those who need longer term therapy can get referrals. Faith-based institutions (such as Spark/Trinity) might not take referrals from Planned Parenthood, but AMC does take referrals.

The Planned Parenthood locations with behavioral health services are Hudson (Columbia County), Albany (855 Central Ave), and Troy (200 Broadway). They will take patients from anywhere.

Planned Parenthood also offers hormone therapy for gender affirming care, with no gatekeeping (except that children under 18 need parental consent). There's no behavioral health or talk therapy requirement.




A regional advocacy specialist with Office of Consumer Affairs bureau of the Office of Mental Health gave us a bunch of information, much of it about resources and trainings available to providers. The bits that I thought might be of particular interest to the general public were these:

New York has an ombudsman program to advocate for both patients and providers who are facing obstacles from insurance companies in obtaining access to mental health and addiction treatment. It is the Community Health Access to Addiction and Mental Healthcare Project (CHAMP). See their flyer here.

Also, peer supports (some by phone) are available through many providers. ("Peers" are people who have received mental health and/or addiction treatment services.) I didn't receive any more specific information on this, nor do I see it on the Office of Consumer Affairs website, but I can request it if anybody wishes. (This might be available through Adult Behavioral Health Home and Community Based Services, which is for those enrolled in a Medicaid Managed Care Health and Recovery Plan. But there may be other peer supports available as well.)
blimix: Joe by a creek in the woods (Default)
Last week, my uncle thought he had the worst heartburn of his life. He walked to a drug store, and waited outside for his friend to buy antacid, which took longer than it might have. When his friend finally left the store, my uncle was unconscious on the sidewalk. His heart had stopped.

He is alive, largely due to the close proximity of an ambulance with EMTs. Most likely, had this happened at another time or place, the family would have lost a relative, and the world would have lost a champion of good.

I am posting to ask you to learn from this. Do not die by failure to recognize a heart attack. Learn the symptoms, which can include (and exclude) any of the following: Pain/discomfort in the chest, arms(s), stomach, and/or jaw (jaw pain won't change as you move it); nausea; shortness of breath; cold sweat; lightheadedness; unexplained fatigue; coughing/wheezing; tachycardia; a sense of impending doom (yes, really).

How to recognize a heart attack (on WikiHow).
blimix: Joe on mountain ridge with sunbeam (Huckleberry Mountain)
Someone I know recently discovered that they had several food allergies. The allergist had informed them that their unusual appetite and thirst could be symptoms of a food allergy: Something that no other doctor had ever mentioned. This testing turned out to have been long overdue. Cutting out the problematic foods not only relieved their perpetual hunger and thirst; it also eased their chronic issues with pain, mobility, energy, and gas. This is a tremendous life change, after decades of unhelpful visits to other medical professionals.

I'd bet that, even if food allergies turned out to be the cause in only a small fraction of similar cases, getting this message out would still help somebody I know. (I know an awful lot of people suffering undiagnosed chronic crap. You probably do, too.) There is no down side to getting tested for allergies, other than having to sit through mild discomfort, so get out there and do it. (I've done it, just to diagnose a slight, persistent cough: Far less reason than many other people have.)

Remember that they don't test for all possible food allergies; just the common ones. But eliminating the common allergens will at least keep them from masking the uncommon ones, making you more likely to notice and identify them. Best of luck.
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