Keeping Things in Perspective

Depressing. That’s the single word I’d use to describe yesterday’s medical appointment. When I saw him a few weeks ago, although I also received what could be considered unfavorable diagnoses, the appointment was couched in more hope, a possibility of answers and treatment. This time, the diagnoses and their ramifications hung naked, with no silver lining disguise. By definition, chronic illnesses or disorders persist; they do not resolve and many, by their very nature, do not have cures or effective treatment. It’s more about managing the symptoms, mitigating them if lucky, and attaining the highest quality of life possible. On good days, when wearing positive attitude rose-colored glasses, this feels like enough, a pill, though big and uncomfortable, is possible to swallow. On other “weaker” days when the pain is just too obnoxiously loud to be ignored, the sunny attitude is stripped away, leaving what actually remains, the somber outcome, the harsh reality. Most weeks are populated by both emotional responses, although in the weeks that are especially peppered with more excruciating and frequently debilitating symptoms, the balance tips in favor of viewing the bleak outlook with the pessimism that it rightly warrants.

The reality and prognosis painted in yesterday’s appointment was particularly disheartening because the first appointment presented the vague description of my health problems in sort of an intangible dotted outline of what “could” (but hopefully wouldn’t) be. Yesterday, the outline was traced in permanent black marker, with all the gaps and white spaces filled in with distressingly boldly somber colors. I left feeling unusual clarity and unusual hopelessness and sadness. Maybe it was the unrelenting rain and March-like temperatures despite the calendar’s insistence that it’s early June, but I felt literally and figuratively cold, wet, and despondent. I couldn’t even form words in my head, just a feeling of endless grayness, swirling around a vacant lot.

It’s easier to imagine a more optimistic picture when things are presented hypothetically. When diagnostic tests objectively present undeniable data that solidify the hypothetical into reality, the important keystone maintaining that hope is removed, and it all comes crumbling down. Although it’s always possible to view the same situation with a different (and more upbeat) attitude, in the former pre-information stage, it’s a genuine optimism, and in the latter, it is feigned, which takes endurance to uphold.

I’ve faced many disappointments and challenges over the years that I was able to overcome or at least tolerate as my new “normal,” like absorbing a small ball of black clay into the multi-colored amorphous blob representing my existence. At first, it adheres to the surface, marring the appearance with an unsightly blemish, but after a few days and continually rolling, folding, and spreading, the blemish is adopted and blended in to the whole. I have built a fortress to shield my flame of persistence and hope from the resounding winds of pessimism, blowing continuously from varying angles to try and extinguish its glow. I will not resign my efforts to hope for the best and put on a brave front. Bad news is just an impetus to learn more, seek alternatives, and be grateful for what I do have. I’m blessed. Nothing I face is terminal; I’m not dying, and that’s more than many people can say. My conditions may be degenerative and manifested in more substantial physiological damage than we initially thought, but all that really means is more joint and muscle pain and less musculoskeletal and GI function. At the beginning of the day or the end, this is still a way more privileged, lucky, and healthy life than many people inherit. How truly thankful I am to have been born into my life, with the parents, family, friends, circumstances, opportunities, safety, and blessings that I am so abundantly handed every day. Any setback I encounter is surely a dream for someone else in her battle in this world. I fight for myself to be strong and that becomes much easier when I view every breath as a gift and every circumstance as a blessing. So maybe I choose to edit that first word. Depressing. I’m not quite ready to genuinely call it neutral, but for now, I’ll settle for disappointing. But, I can work with that.

 

Small Victory

I had a medical appointment victory yesterday, which was especially welcome after a stumble on Wednesday, where, Ben accompanied me to my appointment, but I still left feeling overwhelmed and had a post-appointment stress meltdown in the car.

Yesterday, I not only went alone, but I saw a new doctor at a further hospital (I hate driving, so this was a triumph in and of itself), stuck out the hour-long wait for my behind-schedule appointment (all while getting a worse SPD- and anxiety-induced headache), and then talked to the new doctor. He even said I was “amazingly self-expressive and precise” in my ability to discuss my problems. What are the chances?!

After initially getting off to my typical monosyllabic I-forget-why-I’m-here/I’m-too-overwhelmed-to-talk start, I pulled out my phone and showed him what I had written down: “I am on the autism spectrum and I get a little nervous and shy but I’m really glad to be meeting with you because I have not been feeling well.” Following this line, I had written a list of my current symptoms. Thankfully, he also had my hefty medical records, which he had taken the time to review before I even entered the room; I guess this is why this guy is worth the drive and the wait! Upon reading my prompt, he immediately said he’d start with the talking and when I was ready to respond, I could jump right in.

His method worked fantastically. At first, we sort of briefly addressed the pertinent highlights in my chart: I confirmed them with a nod, and then verbal affirmations, and after a few minutes, with coherent elaboration and explanation where warranted. Before I knew it, I was discussing my current problems in language that made sense to me. He chuckled as he took notes while I spoke. At first it bothered me and then I asked him what was so funny, to which he replied, “You describe things in a unique way and very directly. You admit a lot of things people won’t and it’s refreshing how candid you are.” He apologized for laughing and said he wasn’t trying to laugh at me. I assured him now that I knew why he was laughing, I wasn’t at all offended and to “laugh away because I’m a bit of a weirdo and have no problem admitting my weaknesses.” That seemed to seal the deal in assuring my comfort with him and after that, we had a fluid conversation and I even allowed him to examine me—a process that is usually like wrestling an uncooperative toddler into a snowsuit because I don’t like to be touched.

This doctor not only had fabulous bedside manner and admirable patience, but he was also bright and action-oriented. Too many times it seems like doctors just shuttle me from specialist to specialist or test to test without actually interpreting anything or making a treatment plan besides either taking the “wait and see” approach or the “go elsewhere” one. Although this doctor is sending me for more tests and referring me to two other specialists, he gave me two diagnoses after reviewing the tests I’ve already had and will follow up with me in three weeks after the other information is received to complete the necessary picture for a treatment plan.

All in all, I’m really glad that my phone prompting approach worked and that this doctor had the tools and time to work within my needs. I’m also proud of myself for sticking out the wait because I got paid back in dividends with quality care. Prior to the appointment, as I waited in the loud and stressful waiting room minute after minute beyond my scheduled appointment time, I texted with Ben about how desperately I wanted to leave and I told him I was planning to shortly. After I was weighed and the doctor was entering my information, I texted Ben, “Ugh, just now getting in.” Of course, as the doctor was scrolling on my phone to review my notes, the text alert from Ben saying, “finally!” flashed on the phone’s screen. The doctor said, “someone named Ben just gave you an enthusiastic ‘finally’!” I said, “That’s my husband’s response after I complained sorely about how I wanted to bag this whole thing because I was tired of waiting.”

He laughed. I laughed.

As I left, I emphatically thanked him for helping me and I said, “I’m not pandering to you but something in me knew you’d be worth the wait!”

I do think I fell into the hands of a competent and compassionate provider but I also think my phone strategy and my bravery helped me in this interaction. I left feeling completely exhausted—even more so than usual after an appointment—but instead of being frustrated, more anxious, and confused, I felt informed, confident, and proud.

 

Am I Safe? Are You Harmless?

Yesterday, at urgent care, I had my first trauma-related mini panic attack in a long time. It used to be a disturbingly frequent problem but with therapy, time, and courage, I’ve started regaining trust in men. I’m now able to make a critical distinction: not all men are likely perpetrators of rape or attack. Most men, like most women, are good people trying their best to lead honorable and meaningful lives (or at least not criminal ones). My attacker was the exception to the rule, not the rule itself. After the attack, I feared every man, even ones I knew (except a handful of close friends or relatives). As such, any time I was in close proximity to a man, especially in secluded or isolated environments, I’d panic. My brain would flood with worries: would he touch me, hurt me, have a knife or weapon on his person, hate me for some unknown reason or have some other motive? Was he getting too close to my body? Was there an exit close by? Physical symptoms would mount just as rapidly in tandem with my spiraling thoughts, racing heart, dizziness, a feeling of facial flushing then rapid draining of color, whispers of nausea building to overwhelming sickness. Worse, as if erasing the months passed since the trauma, I’d feel physical reminders of the wounds I had suffered, as if still etched in gaping scabs and swollen bruises on my skin. Even when I’d have flashbacks while doing everyday activities like driving, sitting in class, or grocery shopping, I’d re-feel pain from the injuries I suffered during the attack sort of like when you see a graphic scene in a movie or real life when someone incurs a serious injury and for a fleeting second, you grab that same body part on your own body as if recoiling in reactive pain and verifying your body is fine.

Anyway, for the first year after the attack, any encounter with an unfamiliar man catapulted me into panic or flashbacks. The reaction was so automatic and so dramatic that I found it very limiting. I never wanted to find myself in a situation where I’d be one-in-one with a man or the only woman in a group. So, I stayed home. I avoided asking my male professors in my graduate program any questions during their office hours or while my peers were filing out of class, even if I was clueless about assignments or concepts. Email was my only vehicle of communication. I couldn’t risk it. (Surprisingly, a number of my professors turned out to be instrumental in helping me defeat this crippling anxiety by, of course, being so friendly and harmless.)

Eventually, I got over it by slowly loosening my grasp and gradually letting the fear slip away, by taking small, manageable steps at first, restoring some confidence, amassing successfully safe interactions, and continually trying to expand the “risks” I took to conquer more and more normal situations.

Yesterday, my encounter with the x-ray tech caused all the anxious feelings to flood back in and swell to a critical mass in my brain. With the door shut behind me, I felt mildly nervous, but with all my injuries in the past couple of years, it was certainly not my first time post-attack in a closed room with a male technician; I can think of at least five this year already! Perhaps it was slightly more anxiety-provoking because I had on a gown with no pants or underwear. I don’t know if this is inappropriate to admit or helpful to those with SPD but I can’t wear underwear. I’ve tried every kind imaginable and nothing is comfortable. Like socks, something seamless may first seem tolerable, but then suddenly, it becomes a screaming impossibility to handle. I’ve been known to stop dead in my tracks while out and about and frantically rip my shoes off to peel away my socks when the sensory threshold is surpassed. I rarely see it coming, but even in January, among the icy sidewalks carved into knee-high banks of snow, I’d plop right down and remove my boots to free my feet from a sock: trudging back home with cold, wet feet was still preferable to suffering the offending sock. I imagine this same solution for uncomfortable underwear is beyond socially acceptability, so it’s better to start with nothing! Luckily, the types of pants and shorts I wear and of comfortable fabrics and loosely-fitting designs (though they leave much to be desired in terms of fashion!).

All this is to say that I ended up on the x-ray table with no pants or underwear. A thin, gauzy white gown was my only shield. I lay there, staring up into the machine’s camera arm, my own arms folded over my chest as instructed waiting. Tim, the technician, tinkered on the computer to enter my demographics. With the light out, my heartbeat starting accelerating; first, it was hardly noticeable, but with my hands over my chest, I quickly realized that it was not only beating quickly, it was also pounding, visually displacing my hands up and down with each beat. Relax, I told myself. When Tim emerged from the small closet containing his desk and computer, my ears started ringing and I became dizzy. “Are you OK?” He asked. I nodded yes, unable to speak, but my spooked eyes were a tell that I was lying. “You are very crooked on the table,” he commented. “Can you straighten yourself out?” As I have terrible kinesthetic awareness and body position sense, I am never surprised to hear this and have received similar instructions almost every time I’m at an appointment. I tried my best to align my body on the table. He started gently pushing my shoulders and straightening my neck and then my feet to position me appropriately for the picture. Like a reflex or the pop of a Jack-in-the-box, my limbs recoiled into a tight tuck position over my trunk to avoid his touch. “You’re fine! I’m just getting your spine lined up here. Don’t worry I’ve done this for years!”

I pleaded with my mind to relax. I didn’t want to feel afraid of him, and logically, I knew that he was totally harmless. In fact, I felt guilty even having unintentional anxieties about the situation. We tried again to situate my body as well as possible and then he swung the overhead camera into its designated location. He reached over me to palpate my iliac crests in tandem to verify proper positioning and a level pelvis. This is it, I thought. I squeezed my eyes as if to will myself out of the situation and transport myself to safety. But, I was safe. Just as he should be and just as he should have clearly seemed, Tim was a harmless healthcare worker trying to do his job in providing necessary medical images for my care. He retreated to his computer command station, told me to hold my breath and not move, and snapped an image. As he repositioned me for the next series, I was visibly more relaxed, and a wave of relief came over me, not just because nothing had happened and I knew that I was safe, but because ultimately, I knew the whole time that I was in good hands but my anxious reaction seemed entirely out of my control. I was embarrassed by it the moment it began stewing, and struck by how unfamiliar the reaction had become to me—a testament to the vast improvements I’ve made over the past two years. What was once as natural and automatic as turning my head when someone says my name has gradually become a faint memory, an abandoned instinct like a long-forgotten nickname whose familiarity only resurfaces years later when you hear it again.

It’s easy to feel displeased with my behavior/reaction during the imaging because it feels like I must’ve taken steps back. I’m hoping it makes sense to simply blame it on the stress and frequency of my recent medical appointments. I also choose, in this situation, to recognize the progress I have made. The encounter served as a helpful reminder of how far I’ve come, how unfamiliar and removed I felt from those once-pervasive worries, and how naturally and normally I now face everyday situations without the looming fears of getting victimized by every passing man.

Sick

Something has been off in my body for the past 24, 48, 72 hours. I don’t feel well, though it’s fairly non-specific and generalized: malaise, aches, heaviness and swelling in my joints, unrelenting headache, throbbing muscles scattered throughout my body, and vague nausea. This type of mild sickness is unfortunately fairly common for me, but that doesn’t make it any less disruptive or any easier to get through. It is often accompanied by a low-grade fever and dizziness, but so far, I’ve been spared of those symptoms in this current bout (although the magnitude of the body aches and headache seem to be proportionately worse to compensate!).

Besides the discomfort of coping with the symptoms of feeling unwell (the throbbing joint and muscle pain is the most bothersome problem), I have to combat the sensory symptoms, which are always exacerbated with this sort of illness. In fact, sometimes it is unclear whether I have an actual virus or biological underpinning to feeling sick, or if it’s a product of sensory processing disorder, PTSD, autism overload, or a combination thereof. I have reason for my suspicion as I always seem to get this concoction of symptoms after being in overstimulating environments, experiencing triggering or anxiety-provoking events, or socially stressful and overwhelming situations. It’s plausible that these psychological or emotional stressors do lower my immunity, leaving me susceptible for viral or bacterial invasion of some sort, but the typical timing of events makes that unlikely, as it occurs immediately afterward. The only difference is that these bouts last for several days with no respite, whereas unadulterated sensory overload or emotional fatigue can often be resolved with a long afternoon and full night of rehab and relaxation.

Whatever the cause, when I am sick, my auditory and tactile defensiveness are the most affected: countless tiny sounds—ones even I can normally tolerate—are excruciating. For example, I usually enjoy the sound of birds sweetly singing, but I can’t handle it today. I have noise-canceling hunting headphones, but I can still hear them through those, plus wearing them seems to turn the amplifier on my own physiologic sounds, turning the volume up on my heartbeat, the fluid rushing through my ears, and the normal whisper of my relaxed breath nearly bellows in this internal cocoon. I seem to be able to discern every square millimeter of skin and each individual hair’s slight position change when I move. I can’t allow any part of my body to touch another (like the side of one foot lying adjacent to the other) without triggering a cascade of overloading signals to my brain and bothering not just the skin of the offending parts, but my headache as well. Nothing I’ve tried (ibuprofen, ice, heat, lying down like a pancake, a dark room, a pillow over my head, the headphones, Benadryl, drinking water or tea, etc.) has helped to reset my threshold or reduce the sensory discomfort because it’s not really the illness symptoms that are bothering me so greatly; it’s the sensory issues screaming out with reckless abandon. It is hard to distract myself and divert my attention to something fun or engaging because if it alleviates one symptom, it aggregates another. For example, littering bags of frozen peas on all of the swollen joints around my body lessens the inflammation and provides temporary pain relief, but it irritates my sensitive skin so much that it feels like needles are being plunged into the surrounding tissues. Moreover, I seem to be unable to push through the fatigue into any reasonable level of productivity.

I am not pleased that this is a litany of complaints and negativity, but it is my reality, and it’s not productive nor honest to pretend that everything is fine when it’s not. I strive to be more positive but to maintain the integrity of this blog, I also share my tribulations and moments of mental weakness.

I’ve been here many times before; in fact, it happens nearly weekly, though normally for a truncated duration compared to this current affliction. Time is the only agent of improvement. The sole “solution” is patience and trying to stay calm. And so I wait, testing my inner strength to stay distracted and calm, exercising my resilience and physical tolerance, and stretching my hope that it’ll subside in the coming days.