My Chronic Illness Isn’t A Chronic Illness

chronic illness

My chronic illness isn’t a Chronic Illness.  That is, The Professionals can’t name it.  Oh, they try — half-interested in figuring me out, half not.  Often I feel like more of a hassle for everyone involved than an actual, living, breathing being who desperately needs her shit solved.

For whatever reason, I do not fit neatly into the system.  Not for a diagnosis, not for a prescription (or several prescriptions), not for any real cure.  Standard Operating Procedure does not apply.  My case is “complex” — although clearly my expectation of how vigorously Western Medicine should pursue un-complexing things differs significantly from theirs.

I ask “Why?” a lot.  Doctors don’t like “Why?”  I long for them to take my case as personally as I do, to hear and learn and apply the intricacies of how I tell them my body behaves, and assist me in piecing together the mystery.

After decades of trying to suss out a cornucopia of confounding ailments, I’ve given up believing their deep investment is possible.  Conventional approaches are much too entrenched in the research of fifty years ago, inflexible in their thinking, invested instead in their known routines and procedures.  Routine I am not.

Still, I feel like f-ing crap every day.  Shouldn’t somebody do something?

I’ve been given many “official” labels for my condition(s), sure: Autoimmune Thyroiditis (Hashimoto’s), Hypothyroidism, PCOS, Depression, Anxiety, Eczema, POTS, SIBO, Interstitial Cystitis, IBS, Microscopic Colitis.  I suffer from Unexplained Infertility, and am a Habitual Aborter (HA means I miscarry pregnancies often — even the acronym pisses me off.).

I pee a lot, sleep poorly, have mood swings, random freak outs, and mad itches.  I can’t digest my food properly or therefore utilize basic nutrition, and some days I can barely hold myself upright.  Gravity is not my friend.  I can’t hold a regular job yet somehow also don’t qualify for disability.  Social occasions can be hazardous.  Every day is difficult, although I’m never sure in which way it will prove so.

Of course, “Crazy” is the unofficial term that is most often implied, though not spoken, during the endless clinic visits.  It’s all in your head, sweetheart.  These tests look fine.  Just take a pill, problem(s) solved.  A few years ago, I actually had one P.A. pull me aside, out of my husband’s earshot, and suggest perhaps HE was the culprit: “Are there any problems at home I should know about, Mrs. Bryant?  Hmm?“.

Screw that guy.  I’m not nuts.  My husband is fabulous.  My lived reality is that the pills haven’t helped much, and the tag words don’t get me far.  They are merely clues, directions to head.  Those labels are for other people’s comfort, not mine: the docs can tell me what I “have,” insurance companies get codes to deny me coverage by, friends and family find false relief in finally hearing a supposedly proper explanation.  “Oh, she has that.  Okay, I see.”

But I do not have “that.”  Well, I do . . . there are just so many “that’s” to contend with.  “That” is not the answer; “that” is but a severely limited view of a super huge whole.  Treating symptoms in isolation won’t ultimately fix me, nor will blaming the patient and/or her family when you can’t solve something simply and be done.  

While I am chronically ill, I do not have a specific Chronic Illness.  I have a puzzle instead.  Despite countless tests and theories over the years, no All-Encompassing Explanation has yet been uncovered.  No governing, Unified Plan addressing what has gone offline has been nailed, nor a strategy for how to get all systems back on track.

My goal is to be a healthy, human woman, not a patched-together quilt of band-aided-over maladies merely limping along.  There must be an identifiable beginning point, a root cause.  Seeking a logical, science-based rationale for how and why my body fails the way it does . . . and a concrete path for changing this if possible is a reasonable hope.  Making me feel like it isn’t: there’s your insanity.

I’m no longer looking for a diagnosis.  I’m looking for an answer.

What have your experiences with chronic illness and/or conventional medicine been like?  Please leave any comments below, email me at tenpercentpanda@gmail.com, or use the Contact page on the 10PP website.  All thoughts, reflections, attitudes are always welcome (within reason!). Let’s discuss.

© 2017 Rebecca Bryant/Ten-Percent Panda

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Overcoming Miscarriage: From Patient to Patience

Science sez our cells continually replace themselves . . . and that this ongoing, nifty in-house auto-rearranging results in a full new body every seven years.  If so, then I have just about created a new human being by now after all: me.

Okay, so I was actually trying to make a baby, but whattyagunnado?

Seven Years

Yes, it’s been almost seven years since our first miscarriage.  I can still hear my husband’s shocked gasp after the ultrasound technician announced that there was an “empty sac” in place of what we had both whole-heartedly expected to be the first glimpse of our happy budding embryo.  “Empty sac” is not a child.  “Empty sac” is not a little being to love and nurture and watch grow and laugh and tickle and goof around with.  “Empty sac” is a bad joke.

A really shitty, perverse, unfunny twist of fate.

Looking back, it was obviously naive of us to not be even the slightest bit prepared for a negative outcome, but truly: we were completely blindsided.  It still stings.  This was our first pregnancy, and who could know starting out that something so supposedly natural also had such high potential to be so impossible?

In the looong, agonizing time since, something has shifted inside me, along with my cells.  Some major part of me has come to realize that resistance is futile.  The new cells understand that there is no rushing, there is no controlling, there is no begging or pleading, or changing things.

That doesn’t mean we’re giving up.  Rather, it’s more of a peaceful state instead of a tortured one.  What my shiny, fresh cells have latched onto instead is hope.  Hope is more powerful than everything, when applied correctly.

Before I sound absurdly naive once again, let me clarify: there is a difference here between magical thinking and willful choice.

I choose to believe we can still build a family.  I choose to believe my body can heal, that I can help it find what it needs, that we can still connect, at the right time, with the little soul(s) out there who want to be a part of our strange, odds-defying dream.  I choose to no longer force, to trust that the universe is indeed looking out for each and every one of us, as long as we hang on and keep doing our best.

The very awesome poet Wendell Berry refers to this kind of endless, but optimistic, slog as “the patient work of the seasons.”  It’s about allowing things to happen, and being open to the slow, methodical shifts that need to occur to bring a thing into being.

You can’t hurry Spring . . . but one day it does arrive.  In due course.  After winter.  After Patience.

Seven Minutes

For the longest time, I was a different kind of patient.  I belonged to the doctors instead.  I was their patient, and it stunk.

I was a name on a chart, a lady with a ticking clock and mysterious ailments, unwisely attached to pursuing an ill-advised (even at age 39) agenda.  The power was all in their hands: to cure or not cure me, to perform or deny each procedure, to tolerate (or not tolerate) the incessant questions of a possibly — probably — unhinged woman so stupidly, nakedly in denial.

I felt their skepticism keenly.  As their patient, they were never really on my side.  I was just one of far too many nutty, needy gals they needed to deal with within their overscheduled day, during the average seven-minute appointment Western medicine considers appropriate to address all conditions.

Seven minutes.  You know what else also can’t get accomplished sufficiently in seven minutes?  Umm, just about everything?  Okay, maybe minute rice, three-minute abs, a five-minute journal can be handled decently enough . . . but don’t tell me the intricacies of a female body gone offline can be solved without considerably more care and attention.  The standard system is not a system designed to tackle complexity; it is a system designed to shuffle as many through as it can and be done.

Well, I’m done with that approach.  Now I’m my kind of patient instead.  Me and my overhauled newbie cells will nurture and believe as we see fit, and keep hope abundant and ever-present.  We’ll investigate and consult with carefully-selected medical professionals as needed and weigh what they say vs. our own experience and general BS-o-meter.  We’ll trust in being this kind of patient now and allow for the seasons to perform the work, and hopefully, ultimately, the miracle.

Nowadays, I’ll take seven transformative years over seven rushed, pointless minutes and count myself as alive, even lucky.  It’s still not easy, but the power is in the right place now.  Miscarriage is ours to overcome; it does not belong to anyone else.

What do you think?  How long have you been TTC?  Have you had some unhappy run-ins with conventional medicine yourself?  How have you coped?  Please leave any comments below, email me at tenpercentpanda@gmail.com, or use the Contact page on the 10PP website.  All thoughts, reflections, attitudes are always welcome (within reason!).  Let’s discuss.

© 2017 Rebecca Bryant/Ten-Percent Panda

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George Clooney Can Do It

Will he or won’t he?  It seems Celebrity Watchers everywhere just can’t get enough of speculating over whether George Clooney, age 55, will finally become a first-time dad.

When Bruce Willis and Alec Baldwin welcomed new babies at age 57, nobody blinked. Donald Trump was 59 when his youngest child was born, Paul McCartney was 61, Rod Stewart and Clint Eastwood each 66.  Elton John and Steve Martin both have toddlers at home; they are 69 and 71 respectively.

Papa was a Rolling Stone: Ron Wood became a new dad to twins at 68; Mick Jagger brought his 8th child into the world at 72 and all was peaches and cream (or, Brown Sugar, if you dig).

See anything unfair with this picture?

Society’s default attitude toward “Advanced Paternal Age” is largely accepting — laced with maybe only a few gentle jabs about diaper duty while these daddy-gents are simultaneously headed towards diapers themselves (or, in John’s case, homophobic protests vs. the”designer” IVF babies that allowed him and his husband to build their family despite being gay, gay, gay).

Knee-jerk sentiment toward Ladies of A Certain Age seeking motherhood, however — even when it’s a first child she’s desperately chasing — is not nearly as accommodating.  When Janet Jackson chooses (or is able) to finally have a baby at age 50: watch out.  Snicker, snicker . . . isn’t she a little old for that kind of thing?  (Don’t do this, but if you did: Googling “Janet Jackson too old” returns all manner of hateful Twitter troll tweet reports plus a cornucopia of articles negatively analyzing the merits of her pregnancy.  Search for the men above and any babies on the way for them are discussed joyfully, mostly presented as normal.)

This is the difference between being judged and being understood.  Older moms, and wannabe ones, are routinely viewed through a much harsher lens than their male counterparts.  Their actions scrutinized, decisions criticized, overall parent-worthiness questioned from before sperm even meets egg.  Somehow it is inherently dubious for a lady to have waited to pursue her supposed dream — what the hell was she thinking putting things off for so long?  (Like this is anybody else’s business to begin with.)

In my case, it wasn’t exactly my choice to encounter Multiple-System-Failure Meltdown precisely at the age I most needed last-gasp abundant health; that’s just what happened.  Please gimme me a break that I am still here at 46 as a result.  If you had had embryo after embryo created with your beloved husband implanted in your uterus only to disappear repeatedly before your body deep-dived into disrepair . . . and then clawed its way back toward recovery, year after slow year . . . you very well might be here too.

Instead of getting recognition for the sad truth of this, I more often encounter eyeball roll-ish vibes and what I imagine as the juicy, hushed conversations behind my back: Aren’t they done with that yet?  It’s foolish of them to still hope!  The emotional sabotage here is indirect; such is the nature of bias.  It’s the absence of vocal support — the loud silences — that chip away at a gal’s legitimacy.  Unsure themselves about how to handle the situation, people on the outside tend to assume/hope this topic has been resolved.  This is likely more comfortable for them to believe . . . not so great for the woman still in need of a little back-up, however.

Rather than the understanding, even respect, that the fellas get . . . the Over-45 TTC (Trying-To-Conceive) message boards are chock full of ignorant comments from folks who find it appropriate to freely scoff and opine.  It’s common to come upon some disapproving someone slinging invective re: the ethics of bringing a child into the world so late when, in eighteen years, said child’s mama might not still be alive on earth to take him/her to college.

While, okay, that might happen . . . it’s also true that any child might also lose a parent before some particular milestone.  Tragedies happen all the time; miracles too.  Should a woman really give up on fulfilling her chief, most profound function in life just because some anonymous a-hole is up typing at 2 a.m. labeling her selfish?

Apparently, attacking a woman’s psyche, choices, appearance, stamina is still fair game.  Pursuing childbirth later in life, ladies are continually put in the position of having to justify what the hell they’re doing, what they have been doing all along, what they will continue to be doing for the rest of their years.  Like their babies will somehow receive less love and quality care because they didn’t manage to execute this whole life thing perfectly themselves.

Would a man ever have to face attitudes anything like these?  Nada, nope, no way.

Well, I don’t need to defend myself.  Janet Jackson doesn’t either.  She and I — and countless others — just have to do what’s in our hearts.  The best option I’ve found is to become Bulletproof.  My own personal impenetrable support.  No one gets to make me feel like my Suitable Parent Score is rapidly descending simply because my skin and breasts already are.  I’m the only one who can determine the best timing for the major events in my life.

Women like Sheryl Crow and Sandra Bullock — both single moms in their 50’s now raising adopted children — they kick ass.  Many a famous actress has given birth late into their 40’s: Susan Sarandon (46), Halle Berry (47), Holly Hunter (47), Kelly Preston (a.k.a. Mrs. John Travolta, 48), Geena Davis (48), Laura Linney (49) . . . there are many, many more.  Joan Lunden, Cheryl Tiegs, Annie Liebowitz have all had babies in their fifties.

These star stories are merely high-profile examples; please do not mistake me for being celebrity-obsessed.  The take-away is that George Clooney doesn’t have to worry about any of this crap.  It’s good to be George.  He can become a daddy, or not become a daddy, and everything’s fine.  There’s no negative reflection on his fundamental George-ness . . . no blame if he doesn’t accomplish such a signature feat within his life span . . . no problem or judgement if he does.

Hopefully one day society can get to the same place with poor Jennifer Anniston, now 47.  Rather than continuing to go tabloid-crazy over her every potentially bump-hiding fashion selection, maybe we can give her some space to do whatever she wishes to with her body instead.  She may still bear a child . . . or she may not.  Either way, it’s really not up to anyone else but her to have a say, or a snicker.

Later-in-Life parents, celebrities or not, male or female, are all operating from a sincere place: they wish to nurture, experience, behold new life.  They long to build a family, seal bonds, enter into a new, fulfilling chapter of existence.  They are on a beautiful mission.  Why muck it up?

What do you think?  Have you experienced this same cultural-gender bias yourself?  How has it affected you?  Please leave any comments below, email me at tenpercentpanda@gmail.com, or use the Contact page on the 10PP website.  All thoughts, reflections, attitudes are always welcome (within reason!). Let’s discuss.

© 2016 Rebecca Bryant/Ten-Percent Panda

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Thank you for your interest and support!  If you’d like to hear semi-regularly from me please join the Ten-Percent Panda e-mail list.  I promise not to send any junk.  In fact, I’ll send you the opposite of junk: Ten-Percent Panda’s FREE Virtual Swag Bag!  10PP’s VSB is a fun & informative PDF chock full of useful links to help you navigate a later-in-life TTC journey. Sign up now to check it out! FREE STUFF, wahoo!

p.s. Please don’t forget to check out the rest of the Panda Blog too!

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