Thirty

The line separating routine from monotony is a fine one; it’s often difficult, if not impossible, to determine when one has crossed from one state of being to the next.

But distinguishing between the two, in terms of experience, is hardly a challenge.

Routine, though at times monotonous, carries with it a sense of purpose. There is an end toward which one works: a goal to be reached, a task completed, a project furthered.

Even if met with failure at day’s end, experience is gained. Lessons learned.

Monotony, on the other hand, is the worst kind of tedium. It’s an empty, pointless, going-though of motions. There are no points of reference; no beginning or end. Nothing is achieved because there is nothing to be achieved.

Even if all else is equal – a single point on a map marking both beginning and end – routine takes you out on the trails, into the mountains, and through the countryside before you return to the start.

Monotony is a hamster-wheel, where perpetual motion fills the void, but there’s no substance. It’s a shared beginning-end point devoid of experience through the in-between; nothing is lived, nothing learned.

Monumental effort is required to successfully straddle the two – routine and monotony – and it’s an even greater challenge to maintain balance once you’ve steadied the tightrope.

It’s a line which can be traversed so long as outward conditions remain calm. But when the wind begins to blow and that rope begins to sway, you’re caught — forced to crouch down, keep still, until the conditions pass.

You’re naked to the elements, left with no option but to ride out the storm.

So you wait, and you wait.

And you wait.

But the storm doesn’t pass.

You’re no longer working to balance between routine and monotony — you’re desperately fighting a plunge into the abyss of despair.

After having marked the first anniversary of the initial, planned surgery in May, I tipped my hat to the one-year date of the second, emergency surgery in June.

Things had finally begun to rebound from the massive obstruction which hit in April following February’s third, and final, intestinal surgery, and there seemed to be just enough predictability to allow for a steady routine: a clear, daily regimen to guide my recovery through the summer months and into autumn’s planned medical assessment/adjustments.

As I settled into the rhythm, the physical progress marched right along. The predictability, as always, proved a double-edged sword: It removed the guess work from the equation, allowing me peace of mind that I’d done what was asked of me, what was required to keep the recovery moving forward.

With familiarity, however, eventually comes boredom, and soon the advantage of thwarting the end-of-day anxiety was lost to a new, and growing, steady-state of unrest.

With each day came fresh agitation, increased irritation, diminished ambition, absence of purpose.

Routine was supplanted by monotony, and old foes were only too-eager to fill the void.

The world was no longer in clear view, but walled-off by a weathered sheet of glass. And rather than focusing on the world beyond the pane, I became fixated on the inner side of the glass, focus drifting from one imperfection to the next – from streak to spot, spot to streak – brain unable to shift from looking at to looking through.

This is OCD.

It’s what OCD, at least in my experience, feels like, and when those thought patterns began I immediately recognized its resurgence; the introspection-to-the-extreme a symptom/sensation impossible to miss.

OCD isn’t all repetitive behaviors, irrational phobias, number fixations, etc., though those are common symptoms/presentations. OCD is a brain that cannot shift gears; one stuck in neutral as the gas is floored, engine is revved to the max.

The reason I insisted on having clear guidelines in all aspects of the recovery was to prevent the creep of OCD; to ward off the merciless cycle of over-analysis and subsequent agonizing and second-guessing; to not allow for a state of paralyzing indecision to develop.

But when the brain is stuck in OCD thought processes, even a black-and-white plan provides little comfort. The mind races with alternate scenarios, taunting with various “could have”, “should have,” and “would have” scenarios.

During training, for instance, after completing the row: “Well, you could have worked harder — you’re not exhausted. You’re clearly stronger and able to step it up. Yes, you need to keep the daily distance in check to make sure you’re not burning through too many calories, but if you’re physically able to do more, then you should. You’d be pumping out so many more miles if you weren’t adhering to the plan, after all. So maybe you should stray. Maybe you’re holding yourself back. Maybe you’re making excuses. You’re delaying the recovery.”

Or, after a meal: “You could have eaten more at this sitting. If you weren’t following the plan, maybe you would have, and your weight would be better. You’re hindering the recovery.”

Alternately: “You should have stopped 10 bites ago. The gut is clearly uncomfortable — normal people wouldn’t have polished of every last morsel. I’ll bet you’re going to wake up tomorrow with an obstruction. You’ll need more surgery, will lose more intestine. All because you made yourself stick to the plan. You’ve ruined everything.”

As my doctors repeatedly note, therapy, in the traditional sense, has nothing more to offer, and has, in fact, acted as more of a hinderance.

I have a firm grasp on my mental/emotional struggles, as I have for years, and I have the ability to fully recognize and differentiate between, say, OCD thoughts and rational thinking; between a normal low period and a return of depression; between regular stress and anxiety/panic.

I know my triggers, and work hard to avoid them. Though at times anything can, for absolutely no reason, trigger panic, I’ve mastered ways to intervene at the onset,  redirect the thoughts, and somewhat soften the blow.

Reciting song lyrics aloud, and concentrating on the sound of my voice speaking/singing them, for instance, can sometimes shift attention just enough to ward off a prolonged episode of panic.

So, while not acting on the OCD-driven “could’s” and “should’s”, the brain was undeniably stuck.

I refocused, I analyzed, I made the conscious choice to ignore the compulsions — I stuck to the plan.

But the incessant noise in my mind was wearing me down.

Enter the dark: Depression.

The inability to concentrate; being overwhelmed by simple, daily tasks, or, often, just by the mere thought of them. Productivity is non-existent, as is the ability to get anything accomplished. An already shaky self-esteem completely disappears, as does all meaning.

When not consumed by the steady-state anxiety, when not working to suppress an inexplicable rage or trying to ward-off panic, there was a heavy, empty nothingness.

I wasn’t suicidal, but the mere state of being alive was no longer worth the unrelenting anguish.

I didn’t want to die, but hell — I did not want to be alive.

I met with my GP, the man who oversees my entire team, and we chatted about what was happening. I explained to him that, save for the now daily, sometimes multiple, panic attacks about death, dying, and the absolute fear that, for whatever reason, I’m at imminent risk of death just as I was last summer, I was in control of my actions.

But the brain would not stop; the alarm bells constantly rung. The shower panic-attacks returned, as did the nightmares replaying the worst days in hospital, which were now moving beyond what was experienced, ending in new, even more-disastrous outcomes.

I wondered if, perhaps, a medication change would help.

I’d been on a fair dose of SSRIs from the onset of my emotional struggles at age 11, and continued with them ever since. After years of being mentally/emotionally healthy, though, I had wondered if the SSRI continuation was necessary. But there was never any catalyst, no reason to begin weaning off.

I felt good, normal. So why fix what wasn’t broken?

For surgery, however, to minimize potential interactions, and to make it easier to rule out causes should something go wrong, all medications must be stopped. So, after far too many months in hospital last year, I’d unintentionally gone cold-turkey; the complete SSRI cessation a necessary, but unexpected, occurrence.

Given the terrible physical state I was in at discharge, in addition to dealing with all-too-fresh trauma, it would be impossible to gage whether I did, indeed, still benefit from medication.

Only time would tell, as the physical health and overall state of nutrition improved, as the acuteness of the trauma waned, if I’d return to the emotional/mental state of health I enjoyed up to the first surgery.

I suspected that what was happening now – the nightmares, chronic anxiety, anger, panic, despite all else going well – was a clear indication that, yes, my brain is one which functions best with medication.

I’d already restarted SSRIs, but at the very base dose – 1/5 of what I took prior to surgery, increasing to 2/5 soon after – so it was a simple matter of again adjusting the dosage. In doing so, however, I couldn’t help but feel I’d failed.

If only I’d fought the thoughts harder. Maybe I’d allowed the OCD, depression, anxiety/panic to creep in. Maybe I should just keep pressing on, keep riding the storm out, and things will right themselves.

Thoughts to which my doctor replied: “If you were diabetic, would you insist on going without insulin because simply ‘trying harder’ would somehow force the pancreas to function? These medications exist for a reason. It’s OK to allow them to play a role in your life-long emotional management and mental wellness. If they allow you to be you, why would you feel the need to go without?”

Why indeed.

Aside from the medication change, we decided to address the not-responsive-to-therapy strategy which allowed me to conquer the eating disorder nearly 20 years ago.

It wasn’t through therapy, nor the work of psychologists, that provided me with the tools needed to fully recover. It was my dietician – an incredible woman to whom I remain close – who facilitated the recovery. Only she could provide the peace of mind needed when irrational thoughts arose. She taught me about nutrition, providing detailed insight into the various body systems and how they functioned.

Remember: I was just a child. I hadn’t a clue about how the body worked. I had only fear.

When I completed the in-patient program where she was available around-the-clock for support, she remained a quick phone call away, direct to her personal number.

I trusted her the same way I trust my current medical team. And, as was the case with my dietician, it’s only my medical team who can provide the reassurance, information, and black-and-white answers needed to work through the post-traumatic stress, the anxiety and panic.

Only they possess the answers to the specific concerns regarding my recovery. And it’s only through their personal guidance and reassurance that I’m afforded any sense of relief.

So, a sort of informal “just to chat” appointment was proposed, to occur on an as-needed basis — be it weekly, monthly, or even daily if necessary. An hour to simply talk, review how things are going, ask questions, and address concerns; to chart progress, make adjustments.

To provide absolute, authoritative answers — the only antidote to the panic; only way to mitigate the anxiety, temper the fear.

As the summer wore on, this two-pronged approach proved incredibly effective.

Upping my SSRIs to 4/5 of my longtime, normal dose was a wise decision. Almost immediately I felt the difference: that edge was taken off. As the weeks passed, the permanent state of agitation began to ease, the irritation faded, tension waned, and episodes of panic decreased significantly.

The thousand-pound vest of turmoil I was suffocating under had finally been removed.

I could breathe.

The mind became quiet once more — the noise had stopped. When I say ‘noise’ I don’t mean literal noise – real or hallucinated – or anything audible at all. It’s difficult to explain, but imagine being in a room filled with televisions and radios, all pouring out static at full volume.

That’s what it feels like, the ‘noisy’ brain; a mind that refuses to be ‘quieted.’

It feels like static sounds.

And now imagine, after being stuck in that room for months, the static suddenly stops.

The TVs go dark, radios mute.

Silence. Glorious silence.

That’s the ‘quiet’ mind.

My focus began to shift, too: first, from the inner-side of that pane to the world beyond, and in recent weeks, the glass barrier has been altogether removed. I’m seeing, living, things once again as they are.

The brain is no longer stuck in neutral; mind no longer in state of paralysis.

The ‘just-to-chat’ appointments, indeed proved far more successful than any standard therapy in working through the trauma, alleviating the anxiety, and controlling the panic.

Over the course of a few months, I’ve made more gains in the emotional recovery than I had throughout the previous year-plus.

Though I’m not 100% just yet, I feel the closest to ‘normal’ — that pre-surgery state of mental/emotional well-being — than I have since, well, since before being admitted for surgery.

And I now have full confidence that I can – I will, in fact – fully regain my normal state of being.

As things began to turn for the better on the mental/emotional side, however, a new, potentially devastating medical situation arose.

It started off small, a light swelling under my chin and down into my neck, which I initially brushed off as swelling from a dental abscess for which I’d just been prescribed antibiotics.

But as the course of antibiotics ended and the dental pain subsided, the swelling only increased, eventually growing into a sizable lump — an obvious cause for concern.

Given the number of times I’ve been exposed to radiation – X-rays, MRIs, CTs, etc: Nearly 40 instances in the past year alone – there is an ever-increased risk of cancer.

I won’t drag this out: A series of diagnostic tests confirmed that the lump was NOT a tumor, nor was it cancerous. It was a massive, benign cyst, caused by an underlying issue; further fallout from the intestinal fiasco, but an area which hadn’t been addressed.

Something I’d yet to write about here, opting to do so only if/when necessary. Clearly that time has come, as the issue cannot be put aside any longer and the fix is set to begin shortly.

In sum: When my small gut was not functioning (before the intestinal rehab) I required some standard dental work. Due to my extreme state of malnourishment, however, what should have been run-of-the-mill became an ordeal, complete with recurring infection, disappearing enamel, and ultimately, compromised bone. Unlike the other consequences of a body’s starvation – hair loss, for instance: hair grows back when nutritional status normalizes – teeth don’t recover.

Dental issues will not right themselves.

To make matters worse, the dentist tapped to deal with the ever-deteriorating bone over-sold his ability to adequately and fully perform what was required, and after his questionable work, things were left worse than where they started.

After my medical team became involved, I was put in contact with the specialists qualified to deal with the matter. I’d planned to have an oral surgery consult shortly after the first surgery in May, but, well, things didn’t exactly go as planned, as you know.

The fight-for-life that ensued only invited further infection; extreme weight-loss/lack of nutrition caused further bone deterioration.

Even if I wanted to jump into the oral surgery immediately following discharge, I couldn’t, as the healing ability wasn’t there.

I’d only be asking for trouble.

With the recovery now in full swing, the gut function improving daily, state of nutrition normalizing and weight slowly, but steadily, climbing, my ability to heal from the now fairly major oral surgeries required isn’t a concern.

The cyst was caused by this oral/dental situation, a sign that treatment cannot be put off any longer.

Over the course of about 6-8 months, depending on how well healing occurs, I’ll have a series of bone and tissue grafts, and single-tooth implants where any teeth are compromised. It’s not going to be a pleasant experience, but it will prevent any future bone/palate deterioration and ensure my smile – one of the few things I like about myself – is something I can count on liking well into the future.

Which makes me very, very happy.

This oral issue has been one of two loose-ends to be tied medically, and knowing it will be properly, permanently fixed – finally – is such a relief. The discomfort of the procedures will be well-worth it in the end, and really — there’s no better time than now, while I’m already limited to a pureed intake, already restricted in my movements, to get it done.

The second, and final, yet-to-be-fully-addressed medical situation deals with endocrinology.

As detailed in my last update, the difficult, but wise, decision to halt any further HRT was made. However, just what the long-term strategy entailed was left unanswered.

Of all my medical team, my endocrinologist was always the weakest link. She was smart and capable, but at times seemed uninterested; lacked the leave-no-stone-unturned dedication exhibited by the others; didn’t offer any curiosity to probe beyond what was necessary for an easy answer.

After the HRT decision, my GP tapped a new endocrinologist to the team who’d review my case, overhaul the treatment plan, and oversee any/all endocrine matters from here-on-in.

Going into the first appointment, I wasn’t sure what to expect. So many questions remained after my final meeting with my now-former endocrinologist, and though I trusted my GP to recruit only the best for me, I couldn’t help but worry that, perhaps, I’d leave regretting the endocrine overhaul.

The rest of my medical team – my gastroenterologist, surgeon, GP – are all second-to-none. I’d long wished for an endocrinologist who’d match the others in brilliance, but with the endocrine issues relegated to the sidelines until the intestinal matters were fully taken care of, I opted not to press the issue.

But now, with that decision having been made for me, I dreaded the notion: “Be careful what you wish for.”

We met for nearly three solid hours, my new endocrinologist and I, pouring over my medical history, dissecting each diagnosis, reviewing every test/result.

It quickly became clear that this was indeed the man who’d fully round-out, finally complete, my medical team of excellence.

He explained to me, both in medical terms and non, my various diagnoses, their underlying cause, and the treatment/management options.

And finally – finally – a long-term strategy was presented.

With the thyroid (hypothyroidism) it’s a simple matter of regular blood monitoring and adjusting the dosage as required.

The hyper-pigmentation which developed over the past two years around my cheeks and eyes may or may not resolve as the the hormones are regulated/normalized, so it’s a wait-and-see approach.

The amenorrhea is primary: genetic/familial. Even if I were to continue with the HRT, it would be for naught. My uterus will not function, body will not ever achieve a typical feminine silhouette.

And you know what? Now that I’ve had it explained to me, fully understand the definitive diagnosis, I’m OK with that. What’s important to me, physically, is strength, fitness, and athleticism. It has always defined me, and there are zero limitations – genetically or otherwise – to what I can achieve.

So what, then, is the long-term treatment/management strategy?

Estrogen is important for many reasons, not the least of which is bone (and dental) health. And because my body cannot produce even the minimum required for non-reproductive functions, I will require a low-dose replacement for life.

**Detailed female medical details below, skip if desired**

But there’s no need to force a bleed just for the sake of it, so after purging the uterus of any accumulated lining, a daily base-dose of progesterone will be added to prevent any future build-up (and subsequent forced periods) while allowing for the ongoing estrogen delivery.

**If skipped, safe to resume reading.**

And just like that, the final piece of the puzzle fell into place.

The appointment concluded, I made my way to the car, sat in the parking lot, and cried. Tears of relief poured out, and with them drained all the doubts about the future, making room for a long-sought sense of closure.

No more loose ends; nothing else yet-to-be-addressed.

Finally, everything, every aspect, is being followed and taken care of.

My endocrinologist and I meet again mid-October, at which time I’ll either begin the forever course of treatment, or do another, more aggressive round of preparatory treatment (chemical D&C), delaying the official treatment’s commencement by just a few weeks.

Though everything discussed, all the developments detailed above, have been quite recent, the past two weeks in particular have been incredibly positive, and on October 2  I marked my 30th birthday with a sharpened focus, return of purpose, renewed confidence, and strengthened resolve.

I can do this. I will do this.

Yes, I still have a fair chunk of road to cover before the recovery is complete, but a definite shift has occurred. I’ve broken through the wall, found my second wind, and am once again pressing toward the finish at a steady pace.

Rather than idling to fight the elements, I’m taking them as they come without loss of momentum.

Not only will I complete this marathon, but I’ll finish strong, undaunted by the series of detours and hurdles thrust upon me as I navigate the course.

To all who’ve stood along the barriers to cheer me on, who’ve waited patiently at various distance markers, paying no mind to the time it took me to arrive, to offer words of encouragement, or sometimes, just to stand silently, offering a knowing nod of solidarity and unending support: I cannot thank-you enough.

It’s through those brief, seemingly unremarkable interactions that I gather the will to continue down the long, solitary portions of road.

As I continue down this final stretch, the marathon’s conclusion inching closer by the day, I take comfort in knowing know you’ll be there to greet me at the end, ready to celebrate the conclusion of this long, arduous journey, and step with me into the fresh, post-recovery chapter of life.

What a celebration it will be.

See you at the finish.

xo.

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One thought on “Thirty

  1. Alheli, we will certainly enjoy with you at the end of this, as you said, and then keep walking with all those wonderful things God is preparing for you, we are so happy to hear from your feedback, we have no words, how to say something to make you feel better, how to choose those words that really express our inner feelings, our great love, our extremely pride to be part of your life, your blood, how to say I am with you when we are not even close to know how does it feel being in your shoes.
    I just found one word (actually make it 3), we love you, no matter what you do, who you are or in what conditions you are, We love you unconditional, you are and always be our role model for courage, valour, and being… our Alheli.

    yours always
    Olimpia, Eduardo & cousins Eddy & Danny

    Like

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