6/15

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I got diagnosed with POTS/VVS in November of 2016. They are only two of any number of dysautonomic conditions. I had been seriously ill since August of that year, and sick for about two years before that. Being diagnosed was so important for me. I had known for a long time that something was wrong, very seriously wrong, but it had been hard to convince doctors of that. Like many dysautonomia patients, I sometimes physically looked fine. I was told by more than one doctor that my odd constellation of symptoms was probably nothing and that I should go see one of the campus trainee psychologists. I doubted myself. But no mental change brought about a physical cure. Instead, I got kept getting sicker and sicker. Finally, bouts of fainting landed me in the ER. I was so ill I couldn’t drink water unless I was on anti-nausea meds, and I had no sense of balance – the world shifted around me like the deck of a ship in high seas. That got me a referral to a neurologist, and she discovered a vitamin b12 deficiency and POTS. A cardiologist later added VVS.

I was lucky.

The average time to diagnose dysautonomic conditions is six years. Six years of struggling without answers, six years of doctor’s appointments, medical tests, and therapy. Six years of doubting your own mind, and body. SIX YEARS.

The Dysautonomia Project is trying to change that.Their goal? Reducing the length of time for a diagnosis from 6 years to 15 minutes – the average length of a GP doctor’s appointment. Patients need information so they can advocate for themselves. The general public needs to recognize that this is in fact an illness, and sometimes a very serious one at that – the average rate of disability for those with dysautonomias is comparable to that of congestive heart failure and COPD. Perhaps most importantly, physicians need to be educated about these conditions. This won’t happen without a lot more awareness. If you have a moment, please visit the Dysautonomia Project or Dysautonomia International for more information and to help spread awareness about these conditions.

https://thedysautonomiaproject.org/

https://thedysautonomiaproject.org/project/615-is-the-self-proclaimed-dysautonomia-day-as-it-typically-takes-6-years-to-diagnosis-but-with-proper-training-that-time-could-be-reduced-to-as-little-as-15-minutes/

http://www.dysautonomiainternational.org/

 

 

 

Manners and Illness

Manners and illness seldom glide gracefully along together. It didn’t strike me then. Not while I was on my hands and knees, trembling, inches above the shredded bark filler of the landscaping in a parking lot outside of a hospital. I’d just had a test, and I wasn’t reacting well to the three days without anti-nausea meds required for it. I’d just lost my third attempt to drink water. I was desperate.

So was my driver, who was standing nearby, but for different reasons.

A truck, I think – something large, not an ambulance – pulled up next to us. “Is she all right?” the driver asked. And my driver – the person I was trusting to call it if I was in too bad of shape to call 911 myself, to take me into the ER, to do something – that person said, in tones of great embarrassment, “she’s fine!”

I was anything but fine. Hours later, I shivered in my bed at home, unable to get warm. The sides of my back hurt. I could barely keep my eyes open. My lips were swollen and cracked, and I could barely manage to swallow. It was hell. But I’d finally managed to keep an antinausea pill down long enough to do some good, and my driver – whom I later learned hated doctor’s offices, hospitals, or anything medical for that matter – was the one who was responsible for forcing fluids down me for hours on end until I was fine.

I survived. I also learned how to do unpleasant, but extremely effective, non-hospital interventions for bad dehydration. Something kept niggling at me, though, over the next several months as I apologized for, well, almost everything. I witnessed the discomfort of those who surrounded me when I was sick, and I realized that we are conditioned to expect certain, largely unspoken but fairly rigid, societal rules of etiquette to be followed. There’s a lot of regional varieties to manners, like apples but without the pleasure of still being acceptable once you’ve made sauce of them. Here’s a few from where I live now:

  1. Never chew with your mouth open. …Except when you can barely breathe and are simply grateful to be eating on your own!
  2. Always try some of every food …Except when you have food allergies.
  3. Clean your plate…Except when GI problems strike and you can’t possibly eat a large amount of any food, let alone whatever mystery meat ended up on your plate.
  4. Sit up straight, legs crossed at the ankle (for women)…Except when muscle and joint pain and broken bones interfere, or when falling blood pressure drives your body to automatically curl into a ball, clinging to consciousness even when it’s a misery.
  5. Let older people sit down first …Except when you’re unfortunate enough to be younger and have an invisible illness that means you will be unable to stand.
  6. Don’t take the elevators – take the stairs, it’s better for the environment…Except when you can’t handle stairs, even if this means taking the elevator at the gym down the one story to the basement pool.  
  7. You are always “fine,” when asked, and you always smile.…Not even going to touch this one.
  8. No being sick in public…Except when… no, don’t even think about being sick, mate. Ever.
  9. Don’t make a scene or be dramatic…Except when you have sensory processing disorders, or are absolutely feeling wretched after having received your fifth diagnosis of the week.
  10. Don’t cancel at the last minute, or be late …Except for when you are chronically ill, in which case you will be doing a lot of last-minute cancellations and strolling into places just a little bit behind schedule.

There’s a lot of rules. Even subtle violations of them cause a cascade of immediate reactions. I often get odd looks as I wait to take an elevator, and those odd looks can turn to glares if I’m not showing the appropriate level of respect for someone older than I by giving up a seat, opening a door, or lending a helping hand with groceries. Rarely, I get rude comments, although unfeeling but offensively-intended remarks are far more common. These are the typical “you’re so skinny, you need to put meat on those bones! Don’t diet! You are too young to be taking that many medications! Well, you have a great personality and are more than your body” statements; they miss the medical reasons or self-respect I might have for myself and are embarrassing but not immediately harmful.  It is rare that the embarrassment of my being ill actually leads to real physical danger.

Yet it happens. Someone sick is dismissed as being a “lazy entitled millennial” instead of a chronically ill young human being – and while generationalism is a subject for another post, the rationale is that it is simply bad manners, not a real ailment. A woman is more likely to wait longer than a man for pain relief in an ER – gender differences at play? They cry more, after all; maybe they’re just badly behaved. These things all lead to potential health crises because the underlying societal rules, what even ER doctors and nurses have grown up being subtly instructed in, dictate that when these rules of manners are broken it’s not because something is truly wrong, but because someone is simply out-of-line.

That day, my driver’s instinctual, embarrassed following of the rules of manners nearly had disastrous consequences. But being chronically ill, especially (relatively) invisibly, means that society’s “rules” are going to be broken. For me to accept that I’m not being rude by being ill means recognizing that those “rules” are only guidelines, and that in cases of an emergency these sort of niceties are meant to be broken. In an air emergency, the plane that’s blasting “Mayday!” gets to land first; on the road, ambulances even get to drive on the wrong side! Unfortunately being invisibly ill means that many times those around you aren’t going know that the reason you’re sitting curled in a chair is to battle low blood pressure, or that you’re wearing thin clothes in winter not to be flirty but because your autonomic system doesn’t regulate temperature and you’re burning up. Without the glaring lights of an ambulance as a social cue, no one but me knows just what “emergency” my body is experiencing at that moment.

I’m gradually learning not to apologize, but to gently explain when my breaches of etiquette are caused by my condition. Many understand, learn, and let it go; they’re all right with me sitting while others stand, or enjoying water while they eat food. For some people, being around someone who is that “badly-mannered” is too embarrassing. I’m learning to let them go. For others, adaptations are necessary. If it is too awkward for social eaters to be around me when I can’t eat what they’re having, I find a way to gracefully bow out. The stress of me not eating is psychologically far greater for them than it is for me, but with my food allergies, downing what is available could be life-threatening. I might not have my driver from dehydration day take me to tests again; not only will her phobias make it a horrendous experience for her, but her fall-back to manners and her intense fear could put my life at risk.

It’s not that these people can’t be my friends – it’s that the same accommodations I must make for my own body’s quirks might have to be extended to theirs, too. The Golden Rule of manners is, I suppose, the only one that still applies. Do unto others….and extend compassion.

 

Confessions of a (chronically ill) graduate student

A chronically ill graduate student’s dilemma: protect my spot at the microfilm reader and continue to enjoy accidentally unspooling the reels, or go pick up medicine at the pharmacy and risk losing the machine to some other desperate graduate student in search of an idle 8 hours of frustration??

Hmm.

Decisions, decisions.

Parental Grief

There are so many different ways that chronic illness affects our lives. Once, a long time ago, I lived next to a peat bog. It caught fire one summer. Quickly, the raging flames on the surface sunk down through the layers of peat, burning and smoldering for nearly a year. The area was devastated, the smell was terrible, and the mixture of smoke and fog — eventually dubbed by the locals as “bog smog” — created extraordinarily low visibility conditions. Sometimes the hood of your own car would be barely visible, the one time the exaggeration about the thickness of the local sea fog was the factual truth. Many people died on the roads that year.

Chronic illness is smoldering inside of me. It has been for awhile now. It can flare again, and like the firefighters in that town, all I can really do is contain, and watch, and wait. I’ve had to work hard to accept and adapt to being a peat bog … not that, if you asked anyone who knew how clean I keep my bedroom, it should have been that big of a jump.

Perhaps worse than my new status as peat bog fire, though, has been the impact on my nearest and dearest. Sometimes in the heat of the battle it’s easy to forget about the effects that battle has on others. But at other times — like now, working on planning a family vacation — it is painfully obvious the damage the fire has wrought. Even though I’m a graduate student and have long since left the nest – my old room is now a considerably neater guest bedroom – I still enjoy a close relationship with my family. Watching the devastation caused by the pervasive, smelly smog of my chronic illness has been heartrending and frustrating.

I have to live with my status as a student-with-disabilities every day. But I’m several hundred miles from my nearest family member, a couple thousand plus change from my parents. Their interaction with my conditions is limited by distance, which both shelters and hinders them. Instead of seeing all the good and the bad together, they typically get brief, painful news bites at the end of the day or week … trialing this drug or that, developing a new allergy, sick with another infection. If my parents come out to help me through a surgery (which they’ve done, bless them), then they see me at my worst. When I’m back home on vacation, after carefully trying to make sure I’m at peak functionality, with everything work-related cleaned off my plate and nothing to do except relax, it can sometimes seem like I’m doing quite well. That is until, of course, some plan is proposed that I simply cannot do, and my parents are faced with the reality of my conditions again. Slam, the fog descends, leaving everyone blindly feeling their way through the dankness.

Pervasively, slowly, my conditions began to change our family dynamic. I had to come to terms with my illnesses fairly quickly, as it’s my daily life, although in many ways I’m still learning to cope. Insulated by distance and love, my parents are experiencing this journey to peace more slowly. It resembles nothing more than the grieving process. Even though I am not dead, there has still been a loss: the loss of health for a dear daughter. There are stages to the grieving process, modern psychology tells us: denial, anger, bargaining, depression, and acceptance. It’s less of a smooth train ride with planned stops than a spinning, jouncy carnival ride.

Denial and anger go hand in hand, smoke to fire. Tendrils of disbelief rise smudgily to the sky – “no, this can’t be. You’re just too sensitive, is all. It’s not possible.” But if there is no belief that something has happened, there is no chance for healing. And I am simply sick. Bright anger flames spring up. “That doctor is a @*&%!!!!” “You should never have done that, that was stupid!” “The insurance industry is such a … !” Anger flares fast at anything in its path: at doctors, at a condition, at the treatment path that I chose. Anger is not always a particularly rational force. It redirects pain but doesn’t always process it. From my own battles with accepting my illnesses, battles I still fight, I know that anger is bizarrely comforting in its own way… it devours so fully there isn’t room left for anything else. Perhaps that’s why it flames so readily to life.

Bargaining results in odd little promises, both to themselves and to me. “Oh, you’ll be better by then,” is something that slips out, hopefully, frequently. Far more rarely comes a more brazen “well, maybe this (insert situation or gift) will motivate you to get better!” Less concrete, but no less attempts at bargaining, are phrases that start with “if only,” or “maybe if I/you just” – a bargain with the past or the future. I bargain with myself all the time, as a sometimes outwardly-motivated person: “if I just get through this PT session, I will eat a popsicle as a reward!” At least bargaining shows that there is some acceptance that there is something, or some reason, to bargain.

Depression is bog smog at its thickest. It can be an odd blend of both the practical and the emotional. Physically, isolation is a serious consequence. Staying with me when I’m sick can be an incredibly isolating experience.The bog smog cut off our small town from the outside world, and in a similar fashion depression can isolate one emotionally. However, no less isolating is being “that family with the sick kid,” because it is completely possible to feel separate from the world even in crowded places. The cost of illness in dollars and cents can cause feelings of despondency with terrible regularity, every time the mail is delivered and another bill appears in the stack, the crisp white envelopes always belying the yawning black hole of hopelessness that opens with its flap. Dire situations prompt a lot of wondering if there will ever be anything different, if there is ever going to be a way to get out of this. There is a lot of sadness and regret for not trying different approaches or doing more things when I could, even though they couldn’t have known the future. There is a sense of loss for what might have been: pretty sparkly dreams that they and their daughter held dear, the things that they fought so hard to enable her to do, might now be out of reach.

Acceptance seems to only come in fits and starts. It’s doubly difficult because I continue to get new diagnoses and develop symptoms, only to combat them and rise again. It isn’t a fixed situation, this slow burn of chronic illness. Control and containment are occasionally shown to be nothing more than illusions. It can be dangerous, dynamic, and incredibly unpredictable. I don’t know if I’m going to be able to go with them on a day’s excursion, or if I’m going to simply need to sit and rest. The changes mean that just when they have managed to “accept” that I might walk slower, suddenly there comes a day when I struggle to walk at all. A food I can eat one day suddenly causes an allergic reaction the next. Accepting that your child is ill, and that the “old” child is no longer — illness took something away from you, and never gave it back — has to be one of the hardest things to face. And although I am 30, not 3, I am no less my parents’ child.

It took a long time for the peat bog fire to burn out. Over the next decade, the bog regrew. Sometimes it would look the same for months, waiting for the next season of change. But then overnight, with a decent rain and the right conditions, it would suddenly seem neon with bright new growth, electric life. Now trees grow there, and all the animals, including several threatened and endangered species, are back. It takes time to heal. It takes space. It takes a certain kind of resiliency to weather the fire and then come back, and that my parents try at all is a sign of their fortitude. I am proud of them.

To parents, I want you to know that it is all right to grieve. It isn’t shameful. It isn’t wrong. Don’t be afraid to grieve. For those with sickness watching their parents grieve – hang in there. It might not always seem fair, and it might be painful to experience. But they have to change too, even as you are. Grief is a season, though, and it will pass, like any other season. Eventually the burn scars of the bog are just a testament to the strength of the system, a proof of things endured and conquered. So may it be with grief.

 

Fly high. Stay strong.

Titanium Butterfly

Blackberry Agave Cream of Rice

DSC_0002My childhood home was in a small valley floating in clouds of blossoms and wisps of sea fog, surrounded by spikes of spicy-sweet sage mountains. In the spring, fields of stock, sweet peas, and marigolds spread down towards the sea. It might have been ground zero for allergies, but I spent a lot of time rolling down windows to catch the scent of stalk on a cool morning breeze.

Several years later and most of a continent away, I went into the grocery store. And there were blackberries and bouquets of stalk. Small apartment, allergies, graduate student budget…. I managed to come up with three rounds of perfectly good reasons why not to walk off with arms loaded. The fourth time struggling past with my loaded cart, searching for that last certain something that always, at the end of every single grocery run, defies location, stopping each time I went past to breath in deeply the smell of sweet pastel memories… well, I couldn’t resist.

Coupled with the bliss of creamy rice cereal topped with agave and blackberries – a great and completely elimination-diet, allergy-friendly (for me!) combination – and the first strong morning sunlight in weeks, it was dreamy start to the day.

Confessions of a (chronically ill) graduate student

Today, I nearly cried.

Today someone offered to go grocery shopping for me.

She prodded me to give her a list of what I could and could not eat. She helped figure out what I needed. She didn’t care that in a few days I should be well enough to shop on my own – the important thing was making sure I had food I could eat now.

I am so blessed.

I am so ill, or am recovering from some test or procedure, etc., so much of the time that I would think no one would bother at all. I frequently feel that I’m a burden. Chronically ill = chronically needy. Why should anyone keep caring? But yet they do. And in such a way — the gentle ping of a text, “going to the store, need anything?” – the positive FB message “how about some…?” – the slightly more forceful call of “ok, so how about just what you need now? Have you eaten? What do you have planned for dinner?” —  that it makes me feel like I’m not some burden or good-deed prize for the day. She cares. So do many others in my life.

I am so blessed.

Early Blooms

20170313_181119After a week of balmy weather, we were hit with a cold spell and late snows. I couldn’t take my nice camera out – at this point the “snow” was still that blend of frozen diamonds, glittery chips, and zinging pellets known as “wintry mix.” Too much wind and wet to risk the bigger gear.20170313_181137

I’m also re-adapting to using my bigger, heavier gear myself. Like the poor blooms, I’ve had an occasionally  irksome winter with unpredictable health gullies and mountains. One fallout from this health storm is my apparent inability to hold still while taking a picture and/or to focus the stupid thing. If I stand too long, my body’s automatic “we’re vertical now, folks!” system starts to fail. My heart rate soars and then tanks, my vision blurs, and I’m usually to into my work to notice the focus gradually slipping away from me. The muscle fatigue and pain is immediate and harder to ignore, but the result is the same. A jittery, messy, mucky picture. Anyone out there have any tips? I shoot with a Nikon D5000.