I'd rather not be dealing with it either...

I am grateful that you agreed to see me again. I know I’m unwell – systemically not well – and I know that not a small part of it falls under your expertise. I’d love to experience some kind of sustained improvement in function and quality of life. This is going to take 10 minutes to read, and requires action on your part, so thank you in advance for your time.

Here’s the thing:

I feel like my lifetime of depression and anxiety are being used against me, in an environment that is hugely triggering of anxiety, and the result is that I feel terrified. Terrified to advocate for myself. Terrified to be told it’s all in my head, all because of age, all because I should never have taken prednisone in the first place. Terrified because your esteemed colleagues have gone out of their way to undermine my well-being, making up diagnostic criteria on the fly (like that weakness only counts if a person actually can’t get up from a chair), and making sure that I understand I’m not worth the effort, denying even a 20 year diagnosis of fibromyalgia. Terrified to be misinterpreted, dismissed, mocked.

To say that my experience of both persistent and recurring pain and dysfunction throughout my body these last 4 years is due, in any significant manner, to my mental and emotional state is to disregard current documentation ie plain film images of cervical-lumbar spine; current observations ie bilateral tmj crepitus/pain etc, bilateral knee crepitus/pain, neck crepitus/pain, fingers swollen/painful nodules/recurrent beau’s lines on hands and feet (there are some on my toes right now, by the way) and the fact that it all came crashing down starting in early 2018 IE within 3 MONTHS AFTER STOPPING DMARDS and PREDNISONE LEVELS UNDER 10MG.

And it is to disregard historical evidence: ie anti-rnp, wrist imaging because of theoretical subluxation causing flex/extension/load-bearing and stretch pain (continuously recurring since then); ankle imaging due to recurrent sharp pain, like bone on bone, and sense of instability (never stopped happening); thoracic spine plain film because of months of upper back/neck pain and dysfunction that has continued to recur/persist; jaw plain film images because of increased idiopathic tmj issues (that kept happening); tmj mri showing “internal derangement” when my jaw was locked on the left for the first time after it always being on the right; AND all the while living an active, healthy, productive life, with depression/anxiety co-existing alongside varying levels of chronic and recurring pain/functional limitations UNTIL late 2015, when I started feeling (increasingly, persistently) unwell, but kept pushing myself because: NO work NO PAY.

It is to ignore the fact that I DID experience periods of improvement during 2016-2017, just that they were not particularly stable. It is to ignore that my experience is not uncommon, that there are confounders to treatment for inflammatory arthritic conditions, such as FM, hypermobility, gluten sensitivity/celiac disease, myopathy, borrelia, nerve pain/damage…

It does nothing good for my mental health or anxiety to have these facts tossed by the wayside, the validity of their role in explaining some of my experiences of my body unacknowledged. It feels like I’m being subjected to non-standard or arbitrary criteria, for instance, your expectation that I’ll experience improvement after 3 months (how is this reasonable, since my sleep is still severely disturbed, and IF I ALSO have FM or other factors contributing to my pain and dysfunction? ) or to disregard an historical positive anti-rnp result, or fail to acknowledge the huge gaping holes in the current understanding the role of ANA (ie Pisetzky at the 2019 winter rheum confab). You ask me what I think is going on, and it feels like you’re baiting me, setting me up so you can knock me down, just like your colleagues have done, to deny anything is now or ever has been wrong. I’ve been so undone by their hypocritical and harmful words and actions.

I wish I could simply trust your intentions. I’m trying.

It is not helpful to my mental state not to name the things that are present now, ie osteoarthritic changes to multiple joints, Achilles tendonopathy, worst I’ve ever experienced, symptoms beginning in late 2017 and that developed while wearing (new in 2016) custom orthotics designed to address pronation among other things, suggesting some other biomechanical changes have triggered the current problems - I walk with all the grace of Frankenstein’s monster these past years, because of stiffness/pain/fatigue/weakness; plantar fascia –itis or –opathy, which I’ve never experienced before 2016; and then there is the intense pain under my heels from the first step of the day, along with evidence of pedal papules (going back about a decade for those). For the record, I first used custom orthotics around 2004 as per Dr. Stanley Sweet,(Toronto) because of Achilles pain, thickening from over-pronation, but no plantar pain, which now makes ever step brutally painful

Equally problematic is the apparent refusal to consider 1) the physical abilities required by my former employment, including formal recertification, every 2 years, of physical ability to do the work, which I successfully achieved in 2015; and 2) the fact that I was unable to do any of it by the summer of 2016 because of a combination of pain and functional limitations including physical fatigue, impaired range of motion and loss of strength. When I decided to pursue the aquatics courses in January 2013 that led to me working as a lifeguard and swim instructor that same summer, I outperformed teenagers for strength, speed and endurance. I just got in the pool one night and started swimming.

I understand about not wanting to deal with the messiness of mental health issues during clinic visits. So I’m hoping all of this helps you understand some of the factors contributing to that messy mental state. Osteoarthritis and disc degeneration – that were already present in my early 30s! - may not fall under your remit, for instance, but ignoring it as though it doesn’t exist or have the potential to contribute to the pain and dysfunction I’m experiencing now is wrong, and harmful. It’s what your colleague have done to me. It feels like gaslighting. If you are concerned about my mental state, please understand saying something like “giving you the benefit of the doubt” is hugely anxiety inducing, as though none of the above exists.

I get that it’s a lot to sort out, too much to focus on, overwhelming. I can’t help but constantly be wondering about my reality, and wondering if it being a psychotic break would be preferable to my current quality of life. But then I remember tmj mri reports about internal derangement, and spinal plain films showing disc degeneration and nerve space narrowing and arthroses, and rnp antibodies.

Here’s what I didn’t mention or clarify on January 30, 2020. Many are either new since early 2018; those that predate are now more pronounced. I knew I was on borrowed time, and I was too afraid to push. I don’t think it matters now:

• About the sense of bruise like pain: there may not be bruises present, but there are often (newly in the past few years) prominent surface veins of varying width that seem to correspond to where I feel discomfort, and are tender to touch, from head to feet and everywhere in between. Or it is a deep pain, such as in behind my knees, extending up into the hamstring region and down to the top of the calf most noticeable when I lie down.
  
• The skin on the sides and palmar surface of my hands is now creased/roughened/calloused , red, with varying degrees and types of discomfort; the same is true of my feet, particularly the arches/medial heel. The bulk of this occurred in 2018. The exceptions: 5th finger, palmer and lateral roughness/creasing, extending down hand, 2nd finger lateral and palmer roughness/creasing, both pre 2016. The skin stings/burns (like having been slapped hard), or a feeling that it’s being torn. Sometimes lidocaine helps. My nails hurt, like a narrow blunt object is being pressed down on them near cuticle. All my fingers and toes now have longitudinal ridges, but prior to 2018 a few single ridges on 3 fingers and 2 toes.
  
• My hands and feet, in addition to fingers/toes and wrists/ankles, are sore and puffy, some days are worse than others right from the beginning. It’s in how my wrist splints fit, or how tight my boots feel. My hands and feet get cold out of nowhere and stay cold for hours, in spite of heated blankets. I first experienced this when I was 18 (and intermittently since then), family doctor concerned enough she referred me to a neuro, who was utterly dismissive.
  
• The extent of the redness (that I itches if I don’t take antihistamine) and that I’m still not sure if it’s considered a “rash”, and most of which emerged or reemerged (improved during 16/17) starting in early 2018: across collarbones/sternum/shoulders/arms /breasts small patches of veiny redness at joints that also hurt (knees, elbows, ankles); across knuckles; forearms when they’re really achy; band of discoloration across my nose and cheeks (also was very prominent when I first fell ill, but I doubt that made it into any medical records at the time), sometimes chin, forehead, under/around my eyes. I’ve been very careful about sun exposure, which definitely makes it more pronounced, as do both cold and heat. I see pictures in medical journal articles or similar that show what I see on my own body, images that correspond to known conditions. It feels like I’m being evaluated against arbitrarily tight criteria.
  
• The current puffy discoloration around my eyes re-emerged in mid 2018 (was also present when I first started feeling unwell, but improved), the puffiness then got worse around the same time I gained 20lbs over 2 months (late 2018/early 2019). It is worse on my left side. It is not due to the ongoing disturbed sleep for over 4 years.
  
• Sleep is disturbed – no more than 2 hours continuously - by a combination of 1)pain/discomfort requiring a change in position – eventually my right hip/pelvis/low back is uncomfortable in every position, usually after about 5 hours; 2)temperature dysregulation: elevated temps/low fever/sweats/chills/hot flashes; 3)frequent need to urinate (fewer than 3 times/night is unusual) that is not due to nighttime fluid consumption (which I’ve drastically curtailed in spite of thirst).
  
• Lying down in bed is actually physically painful, with multiple locations feeling pressure and discomfort: back of heels, back of knees, pelvis, elbows, that recur during the night.
  
• Regular daily pain along the margin of my ribs from sternum around to the flank, tender to touch, sense of muscles twitching, fullness/pressure sometimes behind false/floating ribs on either side.
  
• Regular, near daily pain up the side of my head into the temple, mostly left side, occasionally right, sometimes seems to start at the base of my neck near clavicle or just below my ear. My skating helmet (new in 2016) now presses uncomfortably against this area (didn’t used to). Note: “women over 50” is code for menopause, but because of the inherent misogyny of the medical industry, female hormones have been studied only in their relation to reproduction.
  
• Regular daily pain in and around the eyes, muscle twitches, my eyes now have a tendency to stray laterally (according to optometrist), dryness, left worse than right for all of this, and a whole bunch of visual disturbances that interfere with reading, walking, driving, or simply having my eyes open.
  
• Regular daily changes in hearing and tinnitus, pain in/around ear drum (with muscle spasms of same), and daily experiences of painful noise. My ears are almost always uncomfortably cold. Oh, and recurrent sores, 2 spots on left ear, one on right.
  
• Neurological symptoms: muscle twitches causing and entire leg (affecting both sides not at same time), or my torso to spasm involuntarily; tingling that affects only one side of my body, usually left (head/face/shoulder arm, or pelvis/leg), tingling etc in feet (bilateral), and the entirety of symptoms of trigeminal neuralgia, (raised as a possibility by my Toronto doctor, when discussing migraine symptoms, but since maxalt seemed to help nothing further was done). I know this isn’t any of your professional concern, but not making you aware of possible confounders to treatment, or even diagnosis, does me no favours.
  
• Beighton scale of 5-7 depending on the day (thumb to forearm is the ONLY item that has never applied to me), positive wrist sign, symptoms of bladder prolapse, spontaneous bilateral knee hyperextension while walking/stairs (a regular occurrence in my youth ~age 7), elbows painful resistance to full extension particularly under load as though the joint isn’t tracking properly, right hip painful resistance or “cracking” to abduction/flexion/weight shifting/rolling over in bed, feeling that it isn’t sitting properly; neck flexion that triggers sense of impending blackout (not breath holding) and wishing I could take my head off and put it back on again, shoulders (the right one too, that’s never suffered injury) that crunch and clunk painfully, including rolling over in bed or reaching for objects, 4th and 5th fingers (PIP and DIP) that painfully crack laterally from holding/manipulating objects like frying pan, carrying gallon jug of water. And a history of feeling joint instability accompanied by doctors telling me I’m wrong, complicated in part because of the failure to diagnose Hypermobility Syndrome when I was a child, a diagnosis that would ease the way for doctors to accept my experiences of joint instability as an adult. I don’t know if other EDS criteria apply to me, like mild skin hyperextensibility or “doughiness” , I just know it was inappropriately dismissed from consideration based on one element of one element of the diagnostic criteria.

And before I take the drug, there are other things that didn’t come up, that relate to warnings about Xeljanz. I suppose I should get them checked out before starting the medication – just can’t shake the feeling that I’ll be pawed at and then mocked/dismissed/ignored as happened last time I tried to get something checked out by a GP at a walk in.

• Unexplained raised spots on my abdomen that are tender, palpable, occasionally itchy and become more noticeable (along with generalized tingling/itch across abdomen), first noticed early 2017, more problematic since 2018. I don’t consider it a rash, considered mentioning it but it would have required more time, more examination, and I already knew I had been too long. Oh, and ongoing and new GI issues.
  
• I regularly experience arrhythmia, have done so for well over 2 years. Well, 2 different kinds. The first, more common (near daily) feels like “BEAT beat pause” at a normal rate, and seems to correspond to exertion, and also to lying down. It isn’t uncomfortable, just odd feeling, especially when lying down. The second (less than weekly) feels like an absent beat in an otherwise sluggish/heavy rate, that is accompanied by an unpleasant and uncomfortable hollowing/caving in sensation in my chest, breathing feels like a lot of work and general off feeling. Oh, and tachycardia in the absence of exertion.
  
• Pretty much every day, more than once, there are periods when breathing just feels like a lot of effort, unrelated to exertion, and corresponding feeling of being short of breath/not getting enough air. I know I’m not “holding” my breath – when it happens the first thing I’m aware of is taking a big breath in.
  
• Symptoms of recurring kidney stones, intense thirst in spite of regular fluid consumption throughout the day; and in the past 6 weeks routinely darker/more concentrated urine even with water/noncaffinated tea intake of at least 2 liters consumed throughout the day; fluid retention, reduction in daytime urine output with as much volume from 8pm-8am as the opposite, especially if I give in to my thirst/drink more than 2.5l/day; foamy urine multiple times/day, a handful of times really dark (ie strong tea) with increased muscle aches; and there’s that ~20lb weight gain over ~2 months a year ago, that hasn’t budged, around the same time the foamy urine started (late 2018/early 2019).

And this is the role of the GP, to help investigate these other matters – I get that. I tried that. Only to have my words and history misinterpreted, taken out of context, used against me, never told that plain film xrays document physical changes throughout my SYMPTOMATIC spine but instead told I’m a hypochondriac, told enough has been done, along with the outright denial of prior diagnoses.

If you get to this point, and wish you’d just said no to seeing me again, well, I can’t say I blame you. There’s rather a bit too much going on. I’d rather not be dealing with myself either.

You obviously have a very busy practice and I’m not going to get in the way of you trying to help others.

So if you want out, you got it. You just need to put it in writing, that you’ve changed your mind and are deciding not to see me because it’s too much to deal with, too messy, that someone else will be better served by that clinic time.

What you cannot say is that it is because there isn’t evidence , or that there isn’t anything wrong with me, or even that I don’t fall under your remit.

Put it in writing and send it to me before my next appointment, because getting to Penticton is difficult for me, exhausting and physically fatiguing to come by bus because I’m not able to make the drive myself. There’s no point me making the trip if you’re going to remain inappropriately focused on my mental and emotional state as the primary cause of my physical pain and dysfunction.

If you don’t want out, well I need to know that you’ve read and understand these words, that you acknowledge there are confounding factors and accept me for who I am. Maybe you can put that in writing too.

In Sympathy for Schroedinger's Cat

When people with schizophrenia experience auditory hallucinations in the form of voices, the part of their brain responsible for processing auditory stimuli is active, as though they are actually hearing other people speaking. Ongoing research into this phenomena shows it also interferes with the hearing and processing of actual human voices, (e .g. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2525988/) doubly confounding a person’s ability to interact with the world around them.

It is a terrible self-perpetuating symptom, one I’ve seen first-hand in both my own and Dear Hubby’s families.

If you are lucidly aware of your disease, the knowledge makes you vigilant, questioning your perceptions, seeking clues to confirm what aren’t sure of. It leaves you exhausted and uncertain.

If the disease is dominant, the confusion makes you vigilant, questioning your (and others’) perceptions, seeking clues to confirm what you aren’t sure of. It leaves you exhausted and uncertain.

I learned this interesting fact some years ago from an essay by Sir Robin Murray in a wonderful book called What Scientists Think, an enlightening and accessible collection of writing about a range of topics. These voice hallucinations were likened to basic thoughts that somehow had become externalized. Looking at it this way, in turn, offered an approach for cognitive therapy that showed promise with some patients: over time they learned to re-recognize their thoughts as just that. This is no small feat, teasing apart the confusing confluence of (mis)perceptions of actual things from hallucinations of non-actual things. It would be like rewiring your own brain!

And still you’d remain vigilant. Because how could you not, living with and in a body that conspires against you physically and mentally, one that is unreliable, unpredictable, and, let’s face it, untrustworthy?

It might even make you feel Anxious.

Before you know it, your doctor wants to add a new medication. One that will help your “mood”.

Schizophrenia is one of many traitorous, diseases and disorders, keeping company with Muscular Dystrophy, Multiple Sclerosis, Parkinson’s, ALS, Lyme, and indeed most autoimmune inflammatory diseases.

You are Schroedinger's cat, and every day, every moment is like reopening the box, not knowing how able your body will be. Perfect conditions for Anxiety, and it's close cousin Depression, even among the most stouthearted.

Anxiety isn’t new in my life. Quite the opposite: is it structural, foundational, with turns towards depression and a dark affinity for nothingness since grade school. It is so obvious to me now, as I’m sure it is to anyone who knew me then. it was a generalized anxiety, always there in the background, and mostly not interfering. The only thing that saved me was my body, even as puberty kicked in. I remember the self-consciousness that went along with developing breasts when a single digit was still enough to mark my years. Some of my friends were the same, with bra strap lines on our backs. When boys started noticing it was uncomfortable; but I didn't feel anxious about it.

Within a year of getting my first period, (a few months before I turned 11), I was experiencing severe cramps and heavy bleeding and feeling like I had the flu for a few days. It was inconvenient among other things. It caused pain and literal disruption at times (aka nausea) severe enough that I’d miss school. But not anxiety about my body. I was female, I’d be been given “the talk”. This was life.

Through all this time I was swimming competitively. I was good at it, and I liked both the work and the winning. No surprise, it made me feel good about myself. And, also, it didn’t hurt to swim. Yet.
So, I figured out tampons, and occasionally asked for Tylenol, because staying still wasn’t an option.
Anxiety? Yes. In talking about it, when I actually needed tampons and tylenol. Otherwise it was just keep going.

Early in life I learned the blessing of physical activity as a balm against many kinds of discomfort. I was an active kid and I’ve had lots of joint injuries, repeatedly in a few cases. I figure in the 6 years spanning 10 to 15 years old, I spent more than a year of my life on crutches just for my left knee. I was such a regular at the physio department up at the hospital during this time that eventually we just didn’t bring the crutches back. I injured myself, rehabbed and got busy again. Athletics, sports, being active - all of it - gave me focus. A physical outlet. A place (the gym, the pool, the field) and persona (skilled, part of something bigger, valued) that made sense to me, when pretty much nothing else did.

No anxiety about my body, though. I was young, an athlete, and believed the words of doctors and physiotherapists and coaches who told me I could get better, and that it was worth it.

And it was. I learned, very early in life, the joys of physical activity and exercise, of making my body work hard and try new skills and sports.

I realized why, one day while leading aquafit at the Oliver Community Pool, when out of the blue I said:

Ladies! You owe it to yourself to stay strong and flexible your whole life! You never know when you might need to squat to pee.

It got laughs. Because it’s true.

Living that lesson might be the only thing that saves me amidst the may myriad ways my mind and body so effectively betray me these days, enough at times to leave me regretting the weakness of my younger self.

Physical pain is one thing, and familiar, bookending most of my days for decades. I remember my GP doc frowning at me when I commented about it being a rude reminder that I am alive even before I am fully awake. In a weird symmetry, pain would - and still does - drive me from bed in the morning, and by the end of the day lying down again was, and is, the only way to find a few hours of respite.

That hasn’t changed, although the magnitude, and type, and locations, of the pain is vastly amplified. I never used to cry because of it. And it can be confusing, as new pain points and symptoms have emerged since I’ve started treatment or I get a cold, and everything feels worse again.

And a bit crazy making, because I'd report these things to the rheum doc and they seem to just go into a black hole. I’m left wondering if my feeling worse is significant or not, in light of current medical belief that bloodwork and a temperature of 38 are the indicators of infection.

And exhausting, with bouts of heavy fatigue the result of concentrating intensely against the pain to get something, anything, accomplished. But pain is familiar and kinda sorta manageable, if only by screaming into the wind.

Not so much the intermittent sense of motion as I process both extra and absent sounds while wondering if I’m seeing a cloud of midges 6 inches from my face (in December) or am suddenly living inside a disco ball. These auditory, vestibular and visual disturbances range from mildly annoying to distracting to potentially dangerous, since my balance, even my ability to walk in a straight line, is also affected. But not all the time.

I’m often questioning my perceptions. I don’t quite trust myself. I don’t trust my body. I don’t feel like I know it, or even that it belongs to me at times. How else did it take me so long to realize I shouldn’t be able to see my ribs like that? That I’d dropped 50 pounds, bottoming out at 136! over just a few months. Even when I’d deliberately tried to lose weight I’d get to around 160 through diet and exercise, and that was it. That particular conundrum is still officially unresolved, but my money is on methotrexate induced celiac disease or severe intolerance to gluten. I’ve developed a disordered relationship with food, with things I’ve eaten my whole life now triggering bouts of obvious malabsorption while doctors tell me it is IBS. Or ask me if I’m even eating.

Yes. Really.

So there’s a whole extra layer to the anxiety now, and the awareness that, with few exceptions, doctors are bad for my health. I’ve seen too many doctors who have failed me, some miserably, a few with outright lies. They demonstrate remarkable ignorance about their own areas of expertise (e.g. that MTX can cause damage to the small intestine https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2773868/I don’t trust them, especially for how they’ve made me not trust myself.

Bless Dr B, though. He was slow to accept that trying to improve my mood in the face of being so unwell was misguided. He really got it when ALL of me felt so obviously better after starting prednisone again. For about 6 weeks I enjoyed a tremendous, and consistent, easing of the inflammation and pain, especially along my spine; then is was less consistent, and less tremendous, but still far better than before starting prednisone. And now I’m tapering, heading right down to zero. I need to, for a number of reasons. And then I’ll likely be back on it before long.

It has been 2 years since I first saw my GP about symptoms that persist to this day, followed by new symptoms, new sites of inflammation and pain, and too often feeling sicker rather than better. Recent test results* make this make sense.

And, more importantly, provide a meaningful place from which to start.

Again.

*Turns out I’m positive for 2 tick borne infections, Borellia and Bartonella using a protocol called EliSpot, which tests for an active T cell response, that some clever folks have recently developed specifically for tick borne infections such as Lyme. You can read about it here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3972671/
I’m also positive for DQ8, a genetic marker related to celiac disease. Once the hot cross buns hit the stores again I’ll do a gluten challenge and see what happens. I’d like to be wrong on this one, but I don’t think I am.

Not exactly what I had in mind

I was, perhaps, uncharacteristically optimistic when I named this space. Serendipity is a gift of curiosity.

It is easy to embrace the happy accidents, creative joy and adventure that accompany a practice of curiosity. A curiosity rooted in something amazing or unusual, that captures your attention and empowers you. You feel a sense of presence, now-ness, flow.

It starts with exclamations of awe, or a sudden gasp, or hush.

It is fueled by passion.

You want more.

Practicing curiosity is an active state, a pursuit. It is what happens when you go beyond wonderment and seek insight. Curiosity is a means, not an end. Curiosity drives the advancement of knowledge by combining purposeful observation with persistent questioning, bringing some order to the chaos.

And this is important:there is a lot of chaos! Confusion, fear and uncertainty make it hard to do anything well. Practicing curiosity when it demands attention to things unpleasant, unwelcome and unknown is challenging. This need-full, demanding curiosity comes from real accidents, from events and situations that turn you sideways. You are weighed down by the unfamiliar, the risks of knowing or doing seem too great. You feel disorientation, restlessness, paralysis. It is the kind of curiosity expressed when you think “I can’t imagine having to deal with that!”

It starts with shocked silence, or angry, disbelieving outbursts.

It is fueled by fear.

You want it to end.

When it is choice-full and affirming, the practice of anything feels more like play. Still, practice is about performance. It turns ability into skill that can be exercised reliably and consistently, especially when circumstances are not ideal. Practicing curiosity is no different. It is a tool for making sense of an uncertain and changing world, especially when you’d rather just hide under the blankets.

From the awesome to the awful, well-honed curiosity helps you focus on the essential, to see the details, to ask better questions. It is both serendipity AND sense-making. It can help you out of a difficult situation. Or it can get you into one. Too much information and too little understanding, aka info overload, can terrifying, a recipe for disaster: don’t google your symptoms!

But so is the sudden onset of unremitting pain that doubles you over when you’re awake and has you whimpering when you finally do fall asleep, bouts of nausea and fever and being generally ill, too many trips to the doctor only to be told that all the blood tests are “normal”, and all of this going on for months.

So.

I started with what I knew about me:

• a growing list of joints and body parts that were some combination of swollen, stiff, red, tender to touch, or painful in varying ways all the time.
• The awareness that many of these pains were familiar and recurrent, beginning over 30 years back, and completely unrelated to injury.
• That I was under 10 when first diagnosed and treated regarding chronic pain involving inflamed and damaged cartilage and joint dysfunction
• That I’d had 2 separate positive ANA results, at around age 7 and again around 28.
• That a referral to a rheum doc the second time,led to a diagnosis of fibromyalgia.
• That it was very much a diagnosis of exclusion because my bloodwork was otherwise negative and some of my trigger points were atypical.
• That endometriosis was NOT the only explanation for abdominal, low back and pelvic discomfort I’ve experienced for most of my life.
• That my body produces scar tissue inappropriately.

Somewhere amidst words like rib/flank pain, inflammation, arthritis, connective tissue, autoimmune and positive anti nucleic antibody, combined with a little bit of my old friend serendipitity, a result caught my eye. I think it was a lupus related health message board.

Yes, I know, not much to be learned from such places; really the worst place to go if you are unsure or scared regarding your health and don't know how to make sense of your experiences let alone make sense of what you are reading. Thankfully that last bit isn't really a problem for me, and something in the snippet I saw seemed promising.

Imagine doing a puzzle and you’re given only a simple description of the picture. You have all the pieces for that puzzle, but there are pieces for other, similar pictures mixed up with them. You can put some pieces together, but you don’t know where they go relative to other pieces, because there is more than one place they could go. And then, you find a piece that joins this group to that group in a way that lets you finally see how picture comes together.

That’s what I found when I clicked that link. The one puzzle piece that helped bring the picture together, in the form of a new word.
Enthesitis
The –itis suffix means inflamed, so enthesitis is inflammation of the entheses. Turns out, In my case, inflammation in lots of entheses in lots of joints, from head to toe.

Spell check will not recognize it. Or entheses, which it wants to change to enthuses; or the singular enthesis, for which it has no suggestions. In anatomy, etheses are insertions (which in written text are marked out by those things called parentheses) into bone, where ligaments (spanning joints, attaching to bone at each end) and tendons (attaching muscle to bone) transitioning from flexible collagen based fibres to a calcium based ossified structure. That sentence has 3 entheses.

Every joint in the human body has a multiple entheses for the ligaments. Tendons attach muscles to bones near joints, and also along the bones as well. Ethesitis pain can happen anywhere in the body.

All of this was back in February 2016. I hadn't been able to work since early January 2016.I’d been sick since before Christmas 2015. My TM joints started acting up in October 2015 and my pants had felt heavy on my hips through the fall. All the smoke in the summer of 2015 made me feel unwell and took a toll. It was still a month before I’d see the rheum doc. That visit, in March 2016, confirmed what I already knew: I had arthritis. Turns out it is just one of many –itises I have, and in fact have been living with for most of my life.

I’m still trying to put together the entire picture. And it feels like I'm the one responsible for it. For all the time I've spent in doctors offices and the medications, I'm still so unwell, flared up and in pain, there's probably still something missing in the diagnosis. So I try not to spend too much time on questions such as this:

What if I’d been referred to a rheumatologist in my youth with that first ANA, and was having ongoing upper back, neck and shoulder issues, instead of (or as well as) a sports medicine orthopedic surgeon?

Because truly, there are too many other matters to ponder. Some have actual definitive answers. Some feel like they should, but do not. Most demand ongoing nuanced consideration as my health and circumstances change.

• What do I do now?
• Is this how Schroedinger’s cat feels?
• What does it feel like to have anxiety about your body?
• Just how many –itises are there?
• How did thinness become so dangerously equated with health?
• Does pain signify damage?
• Why "The Princess and the Pea" is a really sad story.
• Where did the art of medicine go?
• How do you rest your torso and be doing anything but sleeping?
• Can methotrexate and other DMARDS cause malabsorption problems including celiac disease?
• Is there a relationship between wearing 2-3 inch high heels in front of your patients and being devoid of empathy?
• How long do you take a medication without real improvement before it should be considered a failed therapy?
• How concerned should I be about the ebb and flow of all these pains and dysfunctions?
• At what point do you give up on your doctor?
• What are the dangers of diagnosis?
• What supports are there and how do I access them?

As I’m able, I’m going write about these and other things. The conditional in that last sentence is a big one, because nothing about using a computer is comfortable for very long these days. I started this in June and it is now September. Part of that is me being fussy, but mostly not. Every activity is a balancing act of what I’d like to do and for how long, what I’m capable in the moment, how much discomfort it causes and how satisfying it is. And that’s enough for now.

Information Filters

For the past few years I've had a rather specific cognitive bias: filtering out anything that reminds me of what I no longer have.  This year I've learned that not only is ignorance not bliss, it is unachievable for a curious mind.
Two years ago I managed to be completely numb to Fathers Day: when Dad died suddenly in September 2009, in the midst of what was already a very tough year, numb seemed both natural and necessary.  Fathers Day didn't exist because I no longer had my Dad to celebrate.
Last year, in turn, I felt painfully bombarded with Father's Day messages.  The 3 weeks of flyers and messages, some of them really over the top, brought both resentment and regret.  And it lingered well beyond mid-June, a malaise with no cure.
The resentment is, of course, a function of regret: not spending the time I had; not telling him how much he meant to me.
Whether we like it or not, our societal constructs entail some very clearly defined roles based on gender and age.  Being a Father demands a mix of hard-headed responsibility, soft-hearted kindness and a persona that is both authoritative and welcoming. 
My Dad did not always achieve that ideal, and (like of all us) sometimes fell short of the mark.  What I know for certain is that he wanted to be a good Father; and he kept aiming for that.
This year I can celebrate Fathers Day.
The numbness is gone.
More importantly, so is the resentment.  It faded away in light of the abiding confidence that comes of knowing I was deeply loved and valued by my Dad.
The regret? That lingers faintly, and may never go away. 
That is, perhaps, a good thing: regret has (e)motive power in the here and now to help us avoid more of it in the future.  
Regret tells me that I cannot change my past; and besides, there would never be enough time or words to give a loved one everything in our hearts.
Regret also tells me that for the loved ones with me now, I can and should use all the time and words I have, every day.
So I am ditching my filter, rejecting my cognitive bias and embracing again what is no longer lost.
Happy Fathers Day.