Forgetting and Remembering My “Why”

Lately I’ve been feeling stressed about my writing. Maybe I don’t write often enough. Maybe I don’t share on enough platforms. Should I start tweeting? On top of this self-induced stress, I have been dealing with feelings of pressure to click, like, support, and follow other bloggers and guilt if I don’t subscribe to newsletters and join yet another chronic illness support group. I am overwhelmed by my social media life and I wonder how I let this happen.

The Origins of My Cyber-life

On-line support groups can be a bit of a blessing and a curse. When I was first diagnosed with Crohn’s I became ferociously involved in the virtual world of illness specific chatrooms. I learned plenty from my cyber friends and will always feel an abiding measure of gratitude for their willingness to share and assure me I was not alone. Oh, there were trolls back then and other nefarious types always at the ready to stir the pot but they weren’t the norm and they were quickly stifled. Fast-forward 14 years: The number of places on the internet for help and information has exploded and the dark side of it all has kept pace.

“I’m Tired, Tired of Playing the Game.” Lily Von Shtupp

Jumps to judgment seem to be more prevalent these days. When you are doing well, you want to share and you also can’t sound like a braggart (Do you even have a chronic illness; why are you here?) And when you feel abysmal and want to cry, you don’t want to come across as desperate or hopeless, even if it’s exactly how you feel (Whoa dude, you need professional help!) And heaven forbid you put it all out there only to be minimized or one-upped (That’s nothing; listen to what happened to me!)

I’ve been involved with some stellar groups where cultivating an atmosphere of practical support was their number one priority and I’ve stumbled into just as many that are exhausting. The clinging to pseudo-science “cures” (ah no, essential oils will not cure anything), relentless MLM (AKA pyramid schemes) sales pitches, and typos can be too much to tolerate.

Then there are the unfortunate souls, stuck in the past, unable to move on from old hurts despite receiving the advice and solace they seek. So while it helps to know I’m not alone in my chronic illness struggles, now that I know I’m not alone, do I really need to stay engaged with people rehashing ancient miseries or shilling for a MLM? I think not.

I’m Chronically Ill, Not a Pawn

Join one group or write one story and the rest of social media beats down your door looking for a piece of the action. My news feeds are non-stop full of ads; groups to join, pages to like, and sketchy products to buy. I receive email alerts, pings, and notifications all too often. If you like my page, I’ll like yours. Visitors to your page haven’t heard from you for a while, write a story! Others in your group are sharing, why not join in? Come see what you are missing! You have unread notifications. Ugh!

I highly doubt some poor someone has been checking my profile, searching for new content, and has sounded an alarm out of concern for my well-being. Nope! Cleverly designed algorithms prompt me to get involved and share. Website growth and strength depends on the generating of clicks. The more members they have, the more clicks they get, the more sponsors they can get, and that’s brings us to the real boss, money! Well I’ve had enough; I’ll share when I want to and with who I want to! And there it is.

I’ll Share When I Want to

As I was working through this piece, I recalled a similar grappling session from last year. I re-read that post in hopes of rediscovering my “Why.” Why did I start a blog? (the-process-is-the-goal) Re-reading my words of wisdom helped to ground me and bring everything back into focus.

I write because it helps me to sort my life.

I write because it soothes me.

I’m not creating a brand.

I’m not looking for fans.

If my words help another, I’m humbled.

It’s none of my business what others think of me.

So I will write when the mood hits me and bid a fond farewell to many of my on-line support groups and take a sabbatical from the few I will stay in. Social media will not go dark because I decided to leave a few groups, unfollow a few pages, and click a little less. I however, will shine on.

All photos from Pixabay

Kelly vs. the Pill Case

Previously on WDTM

Last fall when my GI doctor brought up the subject of stopping my Crohn’s medication, I was skeptical. I thought chronic illness required chronic medication. Well, that’s not always the case. Recent research suggests IBD patients who have been in remission for five or more years and have stable lab values (like me) could most likely stop their medication with minimal risk of a flare. He told me to think about it, and we would discuss again after my colonoscopy in the spring.

Fast Forward One Year

All went well with the scope (the-patient-is-fine), we revisited the subject of stopping my medication and I decided to go for it! I relegated my pill case to the junk drawer and have been medication free for the past four months. Last week at my follow up appointment my doctor informed me that all my lab values looked great, vitals were good, and he saw absolutely no signs of active disease! He said I could continue to be medication free and wouldn’t need to return or get labs drawn until April of 2019!

As I walked out of the office, a mix of emotions came over me. Of course I was thrilled to receive a positive report regarding my health and yet I was a wee bit scared of my new found freedom. No pill case to fill and no blood draws or office visits, is this heaven? As I drove home I wondered, “Am I allowed to feel this way, feel normal? Am I still ill if I no longer have a pill case to fill? What if I flare?” Oh boy!

Be Grateful For Whatever Comes -Rumi

Upon returning home, I took some time to process the thoughts and fears running through my mind. I determined my life and health status are not defined by the number of pills in a case or trips to the doctor. I am more than Crohn’s. So, hell yeah I’m allowed to feel normal and savor every minute of NOT filling a pill case or seeing a doctor. Yes I’m still ill; though Crohn’s is quiet, I have other health issues still in need of tending. And if Crohn’s decides to get noisy, I’m fine with that. I am content to enjoy my medication free moment for however long it lasts. And if I need to retrieve my pill case, I know exactly where to find it.

The Best is Yet to Come

The Wake Up Call 

A few weeks ago while chatting with a dear friend; the subject of employment eventually came up. We discovered, neither one of us is working in our chosen field (nutrition) and neither one of us was too bothered by it. Que será, será was the sentiment we shared. My friend then doubled down on her ‘devil may care’ attitude and boldly proclaimed, if she is not gainfully employed as a nutrition professional by the time she hits 60 (she was 55 at the time of this writing) she would not renew her registration and licensure. My first reaction was, “Are you crazy?! You busted your ass for that, why would you throw it away?”

She explained she didn’t see any value in spending her energies and money to maintain her certification when she would be so close to retirement age. I began to understand her point of view but still thought to myself, “Well that’s fine and dandy for her, I will never give up my creds!”

As days passed, her words weighed on my mind. The more I thought about it, the more I started to think maybe I was the crazy one. I gave up my search for a paying job a few years ago, why on earth was I still maintaining my professional credentials?

Photo: Pixabay

When We Do What We’ve Always Done

My status as a Dietetic Technician, Registered (DTR) has been a part of me for almost half of my existence. I have attended seminars/conferences, taken college courses, and taken part in webinars. All in pursuit of the 50 continuing education credits I need to accrue every five years in order to stay in good standing with my credentialing board. Oh, and it’s not enough to participate; I must also keep detailed records of my activities and document everything in a Professional Development Portfolio (PDP).

It’s a substantial investment of time and money but I always felt it to be worth the effort if it meant retaining my status as a credible nutrition professional. I guess after 25 years, it became a habit, one I never thought to question; until now.

A False Sense of Security

Another reason for keeping up my registration is a case of the “what ifs.” What if something happened to my husband, what if I had to get a job? I always took some comfort in having a professional title in my back pocket. But as the old saying goes, “Use it or lose it.” I haven’t been employed for over six years. Sure, I’ve kept up on current events and trends but I have no recent field experience. “Who wants to hire the old rusty diet tech? Anyone… Anyone… Bueller?”

A Sense of Purpose

Maintaining my DTR designation means I can remain a member of the Academy of Nutrition and Dietetics (AND) and enjoy all the honors, rights, and privileges that come with said membership. I recently wrote a blog (sense-of-purpose) about how entering the Academy’s Food and Nutrition magazine recipe contest provides me a sense of belonging, community, and purpose, one that transcends my everyday responsibilities.

In that post, I claimed I would never give up my DTR status (twice!) I believed it when I wrote it, well never say never!

Cut the Cord
Over the years, I have convinced myself I can’t do anything else, be anything else. I am a DTR. My credentials give me, well credibility. Without them, what would I have going for me? I always felt letting my credentials expire would limit my options. As I reflect on the conversation with my friend, I realize the limiting factor is the fear of letting go.

I must remember this important fact: There is more to me than my professional self.

Maybe letting go will free me to consider possibilities I would have never dreamed of otherwise. Another recent blog post of mine was about feeling cluttered and creating space (the-gift-of-pain). I think it’s time to consider my own words, let go of ‘Kelly the DTR’, and make room for what’s coming next. I have no idea what it could be. Isn’t that exciting?!

When Big City Medicine Feels More Like Big Shitty Medicine

My eyes are special, well at least my left optic nerve is. Over 20 years ago, I had an episode of papilledema (inflammation of the optic nerve at the rear part of the eye), that led to the discovery of my brain tumor, and then to a suspicion of NF1. Because of this history, I have an annual eye exam with a neuro-ophthalmologist that includes visual fields testing and the occasional MRI.

I’ve written about my eyes (The Medical Mystery Tour) and in that post, I wrote about my previous eye doctor telling me I needed more care than he could provide, I needed a Neuro-ophthalmologist. He kicked me up the food chain to the Big City Medicine doctors at Hopkins. Last year my experience was fabulous. Well, what a difference a year makes! The following is a recant of my less than stellar experience with The Johns Hopkins Wilmer Eye Institute.

Creating the Illusion of Efficiency

I made the appointment a few months ago. A week prior, I received a text message to confirm. A few days later, I received an e-mail instructing me to log in to the patient portal and complete my check-in. Damn! Sure seemed as if they were ready for me! Like a good patient I complied, lest they follow through on their threats of taking my first-born or a vital organ if I failed to complete my patient questionnaire, cancelled in less than 24 hours, or god forbid was a ‘No-Show’.

Hurry Up and Wait

I breezed in at 11:18 for an 11:20 appointment. I thought I had given my self oodles of time but was stymied by an accident on I-97, curses! I apologized for not being there 10 minutes early as instructed (I truly hate being late.) The receptionist smiled, said, “No worries, they’ll call you when they’re ready.” I found a seat in the waiting room at exactly 11:20, whew!

Thirty minutes ticked by before the tech came to get me for the pre-exam. I wondered if I was being punished for being exactly on time. Cover your left eye; cover your right eye, blah, blah, blah! When we finished, I was told to have a seat in the dreaded ‘second waiting area.’ Eventually, another tech came to get me for the visual fields test, after which she dilated my eyes and sent me back to purgatory.

…And Wait

The waiting area saw a steady stream of patients in and out. Every time a scrub clad employee walked in, my hopes were dashed as fast as they had been raised. No one ever called my name. And not one staff member offered any explanation as to why the delay with my doctor. I admit I didn’t ask anyone either. My eyes were dilated, I could barely fucking see, my day was shot; resistance at this point was futile.

As the TV pumped out a steady stream of mind numbing HGTV, an older couple bickered over which career came first for the Property Brothers. The wife insisted they are actors. The husband was fascinated by his wife’s assertion, could it be true they were actors that became real estate agents? He decided his wife was wrong, the brothers had to be agents first and became actors later. Either way, the wife concluded, “it’s all fake garbage."

Two hours of remodeling mayhem later, my doctor finally popped her head into the waiting area looking for me. She thanked me for my patience, said she gotten behind this morning. I told her, “Being patient doesn’t mean I’m not irritated.” I explained having your eyes dilated kind of screws your whole day, I wasn’t going anywhere.

Everything Suffers

My eyes were examined, I was told my preliminary testing indicated all was stable, and I could come back in a year. I was done in less than ten minutes. I got the sense my doctor felt more defeated by the delay than I did, almost as if she wasn’t fully present with me. How could she have been? She was almost 2 hours behind schedule! I suffered, my care suffered, my doctor suffered, and every patient of hers after the event that balled everything up suffered. How is this quality care?

Health Care Is Broken

At every turn, preventative medicine is shoved down our throats, skin cancer screenings, glaucoma screenings, colonoscopies, dental cleanings and x-rays, etc. The message is: “Get it checked out before it’s too late!” Well, that’s all good in theory but the reality is; doctor’s appointments are a huge investment of time, energy, and money. I will gladly spend two and half hours on my health, but when I know an appointment (on a good day) could have been completed in half the time, I get cranky.

My neuro-ophthalmologist isn’t my only doctor. I go through this kind of crap at least once a month with other healthcare providers and you know what, I’m tapped out! I’m tempted to say fuck it and never go back, unless I start going blind. But who am I kidding; I’ll be back next year because my other options are not worth it.

I hear all the time about choice. Healthcare systems claim you can go off where ever you want for care. Well, within reason. Neuro-ophthalmologist doctors are not a dime a dozen, the closest to me is 40 minutes away. I could choose to go out of network but I’d pay a supreme premium; I can barely afford to stay in network as it is (the price tag for my optic odyssey was $580.00; my patient responsibility is $295.74!)

Inquiring Minds

I’ve chilled out since this chain of events yet I still have so many questions! Where in the morning did my doctor get backed up? Did one of her patients have a medical emergency? Could her office have called/texted me to let me know of the delay, to offer a chance to reschedule? I mean, they texted me about every other damn thing. I wonder what my reaction would have been if, once I arrived, they told me the doctor was two hours behind? Would I have stayed? Probably not.

Is there even a protocol for such a massive delay? I get it, shit happens. No one can predict how their day will unfold. For a doctor’s office, I feel there should be some kind of contingency plan. I wonder if the front of the house had any idea of the mess going on in the back of the house with my doctor. I almost hope they were clueless; at least there would be an excuse for their silence. Rather than the alternative which is, they just don’t give a shit.