The Grief Spiral

So it’s been a minute since we’ve spent some time together here, and imma tell you why. Life has been a little bit of a shit show as of late, well actually as of the last like 4 months. The adage “when it rains it pours” is starting to feel like a bit of a personal tag line. I don’t know what it is about life, or maybe life with chronic illness, but damn it likes to kick you when you’re down. The funny thing about all of this, well not funny ha-ha, funny in a cosmic irony sort of way is that I’ve been through it before and I have a sneaking suspicion it’ll come around again. Are you curious enough yet? Let’s just dive into the chaos together, it’ll be fun.

As you, imagined reader, can literally see in my post below as of July 2021 I was doing pretty well, which as a chronically sick person always feels suspicious. Things were managed, I had a handle on life and Covid-19 was at least no longer ravaging DC, so with extreme caution and hella masks I made it back to work in person part-time. Dare I say I was hopeful, lol, first mistake. Within a couple months, around October I was having major health issues, migraine flares, and some kind of sinus infection that just wouldn’t let up. Not to mention my primary care doc retired, which if you are a chronically ill person, feels like a tremendous loss. They’re not just a doctor but a huge advocate in managing your care with your other providers, and specialists, so that SUCKED. Even though my new doc turned out to be delightful, YAY, we just could not get me feeling better. I had been out of work for a month at that point, contributing to an already taxing teacher shortage due to the pandemic. To say things were stressful is beyond an understatement.

As a sick person, you know you need to take time to get “well” or rather back to your “still sick but well enough to function baseline.” But even after more than a decade of managing work and being chronically ill, especially as a teacher, trying to shake the guilt of letting your colleagues and students down with your absence is a tremendous emotional weight. Logically you know it is not your fault, and there is nothing you can do but to focus on yourself and your health, but the reality of the situation weighs on your mind. By the start of December I was still trying to fight this sinus infection, the fibromyalgia flare it triggered, and really questioning what my future would look like. Working together with my rheumatologist I was able to modify my medication and swap in a new Fibro drug (which of course is $$$), but thankfully it helped pull me out of my flare. I only had to throw-up everything I ate between Christmas and New Years as I titrated but that’s the cost of doing business.

Just as I started to see a light at the end of the tunnel with my health, Omicron surged in DC. As a high risk individual, I mean I couldn’t get rid of a fuxing sinus infection for 3 months, I wasn’t safe in-person in the classroom and I was forced into one of the most difficult decisions I’ve had to make. Unfortunately I had no success in trying to seek accommodation to teach remotely, and didn’t want to be forced into taking unpaid leave that just leaves my students with more inconsistency and lack of quality instruction. Ultimately I decided it was just time to walk away. It was what was best for me to be able to deal with my health, and it was what was best for my students to be able to move on and find a permanent, consistent, dependable solution. Frankly, it was heartbreaking. The real kicker being that this isn’t the first time I’ve had to walk away from a career, a passion, and something I’ve poured my life into for so long.

Fun fact, being a teacher was never my plan. I trained, studied, and planned to be a Curator in an art museum since about age 10. I did everything in my power to make it happen, even as my body threw medical hurdle after hurdle at me. The scholarship, the internships, the study abroad, the GRE, even the PhD program applications were almost done. But as I said before, when it rains it pours right? In my final year of college I reached a point of complete crisis. I had to be hospitalized, I lost a close family member, received 3 new diagnoses, even my long-term boyfriend dumped me. All of a sudden, grad school, that plan, that dream, the intense competitive curatorial programs were thrown out the window. Talk about shitty you know? I barely even graduated, only to pack up and become bedridden.

Eventually, I was able to manage my disability to the point I could work when I found a teaching, mostly because I needed something stable with good health insurance. I didn’t know it would transform into something that I love and gives me a reason to get out of bed most days. But now? Saying goodbye again, all those feelings come rushing back, the grief, anger, sadness, frustration at my own body. I spiraled HARD for a few days, and it’s not like I can just hop along to the next thing. Will there even be a next thing? Not to mention the brutal reality of life as a sick AF person, fighting with insurance days on end, trying to make sure I don’t lose treatments I desperately need, and even begging schedulers to squeeze me in before my 31 days of benefits run out. It’s the most frustratingly helpless feeling I’ve ever experienced. You are on one hand in this personal emotional turmoil, and then on the other quite literally very ill and fighting a fucked system for basic care.

So to say the last few months have been challenging may be putting it lightly, but I think given my new free time I hope to be sharing my unedited thoughts with you more often. It’s cheaper than therapy, and you all know I definitely don’t have insurance to cover that shit. I’ve definitely been in my grief spiral for a lil bit now, and I’m trying to find some closure and acceptance. Our bodies make these choices for us and as often as that happens for some reason I never seem to get used to it. Feel free to reach out or leave comments, I’m always open to give or receive help, although I’d take mine with a grain of salt. Thanks for reading my madness, and remember: I’m TOTALLY FINE.

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He’s just not that into you

Pardon the brief hiatus in providing high quality content, read: run on sentences and profanity, times have been a bit weird lately lots of flux and lots of bullshit, which is discussed below. For shorter quips and such please do tune in to my instascram @the_illest_blog also clickable here. I like to think I’m funny so it’s worth a quick look…maybe?

Anyway back to your regular programming:

He’s just not that into you

Most people by their late twenties have experienced a breakup, maybe with a romantic partner or even just a bestie that turned into a a major a-hole. Let me tell you, heartbreak is no joke. As someone who literally got broken up with on Valentine’s Day for being chronically ill and no fun any more (yeah I know, what a dick right?), breakups are the worst, and yeah yeah whatever we grow from them, they teach us, whatever, blah blah blah.

If you’ve tuned into this silly blog of mine for a while you’re maybe like wait, isn’t she married to her home health aide husband? Yes, I am still married. Today is not about a partner or a best friend, it’s about someone dare I say even more important: my Primary Care Physician.

On Tuesday July 16th, 2019, at 2:44pm I read the words that made my heart sink.

Dr.Lang will be leaving the practice, to relocate to California to be closer to family.

Uh, EXCUSE ME, what the literal fuck? No one consulted me about this? How dare he just throw away all we’ve built the past three years togethers? And to break up with me via public announcement on the website?! That’s worse than that episode of Sex and the City where Carrie gets broken up with via post-it note. I was in shock, denial, and all around emotional disarray all at once. I exclaim “YOU CAN NOT BE FUCKING SERIOUS RIGHT NOW, THIS IS NOT HAPPENING!” And only a little concerned my husband looks up from his work like, “candy crush?” (Obviously I’m never over dramatic at all…) to which I respond, still shouting mind you, that the worst has happened, and read aloud the heart-wrenching news. To this my husband responds, “Ok so we’re moving to California?”

You may read this and think it’s silly, it’s just a doctor, who gives a shit, there are loads of them. Why on earth would someone be in such shambles over, well…this? For me Dr. Lang was a lot more than just a doc. When you have such a long ass list of ailments like most in our club do, you typically have a lot of doctors. With so many, some experiences are not so great. They can even be so awful and traumatic they can result in forms of medical PTSD.

When I moved to a new city in 2016 I was petrified at the idea of having to find a new primary care physician. I had to leave a rheumatologist I loved in Cleveland and start over, which after having a horrific experience prior to that doc I was not super excited about it: enter Dr. Lang. I did research, stalked his ass online like you do for your friends tinder dates, and thought YOLO let’s do it. Who knew I would find one of the most dedicated docs I’ve ever worked with.

It’s unfortunately all too common that medical professionals don’t believe patients with rare autoimmune disorders leaving them undiagnosed, untreated, and in pain for years on end. Dr. Lang never doubted a word I said, and stopped at nothing even the classic “your bloodwork looks fine,” mystery that happens so often. It’s that dedication to your patients’ quality of life that was something I’d never really had before. No doctor ever responded to my online patient portal questions at 11PM on a Saturday night, or even figured out that all my symptoms for the past 8 years meant MCAS, not just shrug and say I don’t know.

When 98% of your life is managing your health, your partners in that battle with you are your doctors and caregivers. So yeah, this does feel like a personal loss, a breakup if you will. I am sad as fuck, I am losing such a great partner, and dedicated member of my team. Not to mention he’s the one that gives me all my drugs. I know I’m one of many patients, but I think it’s pretty remarkable when a care provider makes your care feel like a priority and that’s something that sucks to lose.

If there are any budding medical professionals out there reading the utter nonsense I write on here, be a Dr. Lang for your patients not a Dr. Asshat. You don’t know which ones might blog about you. (See bio for more info on Dr. Asshat)

Oh you made plans? That’s cute.

The first time I really remember my health ruining my plans was in 10th grade, I was supposed to go to a party at a friend’s house, and this was like a group I was trying to establish myself in as a young and spry 15 year old. But alas my body had other plans. During the social studies portion of the Ohio Graduation Test, given to all sophomores on that Friday, I turned my head abruptly and all of a sudden I was like holy fucking shit ballz, what just happened. So my head was stuck turned to the side and in like bonkers pain about an 8 for young Alex. However being the person I am, I of course didn’t tell the teacher because it was a testing environment and I didn’t know the teacher proctoring the test and didn’t want to draw attention to myself and also had a very important chemistry test 8th period. The rest of the day everyone is like uh are you ok? And I’m like yeah it’s great everything’s good I don’t need to go to the nurse I’m fine. Not a single teacher asked about it. Thanks guys. Make it to the end of the day, meet my older brother and get in the car to go home. We drive in silence per usual, (it was a rule of his at the time), until we cross the railroad tracks on our route and I burst into tears, am blabbering about the neck and the chemistry test and meanwhile he’s like what the fuck is happening and also what kind of psychopath stays at school to take a test, we’re going to the ER.

All in all, after a lot of crying mostly due to the unwanted attention, and some morphine, they concluded I had a pinched nerve and sent me on my way with some muscle relaxers. Way to go to my 18 year old brother at the time he handled things pretty well in retrospect. But the worst part was my Mom with all her love and concern (so annoying right?) told me I couldn’t go to the party because I was too high. I planned and planned and studied and planned and alas a stupid nerve ruined my fun. Little did I know at the time that this would be the first of many a plan my health would ruin.

I’ve dragged you all down memory lane with me largely because it’s so funny how little I’m bothered by it all now. My doctors office called me about 4 hours before my minor surgical procedure today and told me they had to reschedule. Insurance decided they didn’t think it was necessary anymore and now we have to do a bunch more shit. The office administrador was super apologetic and I’m just like, “whatever man it’s not your fault let’s just reschedule that shit.” Whenever I try to make a plan more than a month out I feel like I’m tempting the chronic illness demons, or whatever else demons. Like oh you wanna get your PhD in Art History? you already took the GRE? and did your applications? LOL SIKE Let’s hospitalize you and make you dependent on 6 medical specialists instead!

Now I think to myself Oh? You want to make a long term plan? That’s so cute. So naive. You know nothing Jon Snow. What I do know for certain however is I will never prioritize a chemistry test so high such that I end up in the ER as a result. What a dumbass.

PILLS, Baby!

In the (semi) famous words of Parks and Rec’s ever ridiculous Jean Ralphio, in response to the question, “Why are you like this?” I too respond with, “PILLS, Baby!”

Although Jean Ralphio’s pills were most likely recreational, the sentiment still rings true for me and perhaps others that are rocking the Rx life. Just last week I was at my Primary Care Doc’s office, who I love dearly, seriously the best ever, which is why I can never move. We were chatting about the timeline of my really bad flares over the years since this past year has been especially shitty. The conversation ended up comparing how I felt during times when I lived abroad vs. here in the states.

My Doc asked about what medications I was on if any at that time, to which I responded candidly,”oh I was still on my baby’s first drug cocktail.” My Doc is of course very used to me saying shit like this, we’ve been together 3+ years and see each other A LOT. So after shaking his head in slight amusement and disapproval, he responds, “so just the cymbalta, flexeril, and plaquenil then?” To which I smile and say, “see Dr. Lang you understand me so well.”

So for reference those 3 little pills have now turned into 30 little and some quite large pills, which comically enough none of my docs can keep track of, once my beloved Dr.Lang asked me what I was taking and I was like “pull up my chart brah,” and he looks at the computer then at me and then I’m like “UGH FINE ILL PULL UP MY LIST ON MY PHONE YOU ARE SO LAZY.” Jk jk he’s the best but that interaction did happen. And of course I always have a detailed list of my medication on my phone because once an ER doc asked me about a potential drug interaction and I was thinking like umm isn’t that like your job? (More on being chronically ill and going to the ER later).

Anyway PILLS Baby! So here we are with more pills than a care team can keep track of and I’m on the light end of the spectrum folks. Because I have yet to add auto-injectors, a port, or IV fluids and medications to my list like so many have to manage. But for someone who bopped around with nothing but a backpack for months it’s a different life. Drugs (and not the fun kind) are their own line item on my budget now. I have to carve out the 30 minutes every week to fill all the goddamn little compartments which is no easy feat with a tremor.

None of this is debilitating or particularly life altering, it’s just something that you now have to always consider. There is no more crashing at a friends because it’s late and you don’t want to call an Uber, because you need those fourteen PM pills in the Friday compartment, or your whole Saturday is going to be fucked up. Uff don’t even get me started on travel, Oy mother fucking Vey! It’s just this kind of tether, you’re only as free to wander as the number of pills you can get mail order. As a previous self proclaimed wanderer that kind of fucking sucks.

Still figuring out this new paradigm. A pill paradigm if you will. So far the number keeps going up, hoping some day it may go back down. Also if you are reading this and thinking how do you know if they even help with so many blah blah bullshit blah self righteous blah…. I have had to do a full wash out of all my meds before aka not taking them for a week or so until they’re out of my system for testing, and lets just say I definitely know they work.

Insomnia: Can’t Stop Won’t Stop

So I suffer from some serious insomnia, which *spoiler alert* is how this internet sensation came to be. Insomnia is a HUGE symptom and side effect for many chronic illness sufferers. Coincidentally being in constant pain makes sleep challenging. Then not sleeping makes pain worse it’s a lovely cycle. I could talk about insomnia all the live long day, lit’rally #teamnosleep However this post is dedicated to a very specific form of self sabotage that for whatever reason I just keep doing despite its adverse effect on my overall sleep hygiene.

A common practice among many “regular” people is to read before bed. Maybe some news, a little non fiction, a contemporary novel, the People magazine Snapchat feed, have your pick right? I, an avid reader, when my eyes/brain are working love to dabble in all of the above. However, unlike most people when I start reading a book I really can’t stop.

This quirk we’ll say is honestly like some sort of character flaw that has been interrupting my circadian rhythms since I was 7. I find myself picking up a book or opening my kindle app and then it’s 4hrs later and I’m like wait pause excuse me was I drugged where am I? what time is it? I have no memory of this; I was in the book this whole time.

All this brings me back to insomnia and why I cannot read before bed. It will almost certainly turn into a literary binge because I can’t self-regulate. I just voraciously love to read. I’m inclined to blame my first grade teacher Mrs. Taylor. Though I also think the clip on booklight industry shares some responsibility because that was just fuel on the fire. Pro Tip: if you experience insomnia DO NOT engage in interesting activities to kill time because you won’t sleep ever and will get bad skin and be crabby.

Is anyone else stuck in this masochistic cycle? Just me? Cool cool cool cool.

“Coming Out”

This is something I’ve grappled with ever since my chronic illness became this thing that really started screwing up my for lack of a better word “normal” life. Whenever I find myself in a new situation or predicament, especially professionally, at some point it always happens that I have to come out as chronically ill (borrowing the phrase from lgbtqa+ hope no one is mad). I don’t just get to be Alex that frizzy haired over caffeinated ESL teacher with all the clogs. If I need more than 3 consecutive sick days I have to disclose this deeply personal aspect of my identity to complete strangers. I am chronically ill, I am living with a disability, and yes I know I don’t look like it.

Every new doc, new job, new friend, new whatever I have to rehash the details. Sure I have my medical history monologue perfected at this point for new docs, but that’s no where near the feeling I’m talking about. It’s almost a feeling of panic like I’ve been caught trying to pretend everything is fine and dandy: that I don’t have this huge secret. I worry and worry that things are going to flare up or something is going to get worse or I’ll have a bad reaction at work or out with new friends . That I’ll get caught and have to confess that I’m oh yeah I actually have multiple somewhat rare and invisible illnesses. It’s casual.

As much as I love to be so candid about some of my experience with chronic illness for my own entertainment, the reality of the situation is that, Yes, I am dealing with some shit and it affects every aspect of my life and it’s really fucking difficult and emotional and all the other things. It’s easy enough to tell your boss you need the afternoon for a doctors appointment, but how do you go about even explaining that you need to do a wash out of all your meds for invasive testing over the course of two weeks and you don’t have a fucking clue how that’s gonna go down. “People” don’t really take two weeks off for doctors appointments, but as anyone in the rare disease gang can tell you sometimes between prep and the falllout that’s just how long it’s going to take to return to again that word “normal.”

So here I am sharing my 10yr+ medical history with yet another boss because shit just can’t go smoothly can it? I have to go into the intricacies of my diagnoses, what an auto immune disease is, the fact that MCAS is quite literally unpredictable, that no I’m not making any of this up, and the fact I am barely holding my shit together. Lest we not forget folks: I still don’t look sick…lolz.

I think of this process as a “coming out” of sorts because you clue people in to having a chronic illness, an invisible disability some tend to re-classify you. I mean throw the word disability around in the work-place and everyone freaks the fuck out and needs to call HR, before talking to you ever. And with coworkers, the greetings now are always a “how are you feeling?”…or subtle back up plans made without you to be in place “just in case” It creates this cloud of “sick” stigma around so many things that’s often beyond unnecessary, all stemming from shit you probably didn’t even want to share in the first place.

It’s tricky wavering between these two poles of full disclosure this is what life is like being chronically ill, or maintaining the right to keep private what for many is a deeply personal struggle. Some days I want to say “fuck this, guess what I take 28+ meds a day, have had more docs than boyfriends, and don’t have time for your shit,” whereas I have other days when I want to throw my laptop at a cabinet of medical records and crawl under the covers forever because I have to prove the legitimacy of my disability to a bunch of HR assholes* and just scream, “you don’t know my life!”

So….yeah it’s a balance I guess. I’m definitely working on it…that and the shouting/cursing.

*No offense to anyone in Human Resources you are the real mvps most of the time

Russian Roulette: Mast Cell Edition

So if you’ve read my saga of a full personal bio you know this, if not SPOILER ALERT, but Mast Cell Activation Syndrome/Mastocytosis are among my principal diagnosis and play a fairly important role in keeping me nice and ill. A huge part of managing this disease is knowing and avoiding your triggers, which makes sense as your mast cells are already doing crazy ass shit on their own, then you throw other histamines in there and it’s a clusterfuck. Very technical language I know, I’m basically a doctor.

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SOS from an Uber, perfumes are one of my biggest triggers. Twas just about to barf just moments after this snap.

The fun part is that virtually anything can be a trigger, environmental changes, food, stress, you name it, we react to it. One might think however that once a trigger was discovered, say dairy for example, you could be like adios queso! Then todo bien, but one would be wrong. The thing that makes MCAS such a sneaky bitch is you may react to something you’ve historically never reacted to before, and vice versa. If I had a dollar for all the shit I’ve had to throw away because it spontaneously started to make me itchy after days or even months of being hunky dory…I could probably quit my second job.

Alas, this is the essence of Russian Roulette: Mast Cell Edition. Never know if that barrel is empty or filled with hives, tachycardia, and oh so much more. It does however lend hope to the thought one day I may be able to eat Flamin Hot Cheetos again without getting hives all over my body. Silver linings ya know?

Also quick footnote on #triggered, in the photo it is quite literal in a sense not referring to its definition in a mental health capacity, if you use the term in jest give this a read. Give respect, get respect.