The Grief Spiral

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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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Welcome to the Club! It low key sucks.

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Somewhat recently, well not really but what even is time any more? A very dear friend of mine, one that has been with me for the past 10 years of being wellish, then not so well, then being ill AF, has involuntarily become a member of the chronic illness club herself. It’s been weird having a “regular” especially pre-illness era friend become a chronic illness friend, because typically those kinds of friendships have been fairly separate in my own mind. This isn’t to say my “regular” friends don’t take part in chronic illness experience or my largely online chronic illness pals and I don’t share memes and bravolebrity gossip. It’s just for me, in my head they’re separate because I know that there are some things my “regular” friends just are not going to ever understand, no matter how educated they are on my illness, or how many years we’ve been besties.

So my friend let’s call her Regina Phelange, had some funky cardiac shit going on for a while, doc said oh you just have anxiety and I said oh you just have a demeaning old man asshole doctor, and also probably POTS. Anyway thanks to my experience with people not believing me, Regina, armed with knowledge, goes into a cardiology follow-up and does some kickass self advocacy that would make any chronic illness patient proud, and onward we go for more testing. I, being both one of Regina’s closest friends and having gone through all this bullshiz myself two years ago, was obviously pretty invested in this process, and how my girl was doing through it all. Lots of texts and updates and just being there for it, finally, a Tilt table test later and what do you know we have POTS.

Classic Regina Phelange featuring a cardiac episode…seemed appropriate

I realized albeit selfishly that it was actually kind of dare I say? cool that someone who knew and understood basically every other aspect of my personal life, also finally was starting to see this part too. Obviously no one wishes literal ill on their dearest friends, but if we’re looking for silver linings this would be one of them. My inner circle definitely understand low spoon days, the annoyance of pill sorting, and fights with insurance and all that on a comprehension kind of level, but to have someone so close to you just get it because they’re going through it is different. It’s shitty obviously, but it’s special too.

Having someone you can text about your sweating and weird palpitations without feeling like you’re complaining because they’re having them too is kind of comforting. Everyone insists me talking about my medical shit isn’t awkward or inconveniencing or a mega bummer but it’s also not their normal. So to have a fellow spoonie to talk about that shit with is pretty dope, the added perk in this scenario being that Regina was already a dear friend so the transition was seamless and kind of wonderful for both of us in that sense. We already have that long cultivated best friend shorthand and POTS and PT and salt capsules just fell into the conversation.

Something else that kind of dawned on me thinking about everything going on with her now, is how different Chronic Illness origin stories can be and what makes them how they are. Perhaps I’ll delve more into what I’m calling origin stories in another post, but the take away here was that a few times Regina asked me like, “oh am I bothering you with this?” or “I know you have so much worse going on but can I complain about…?” To these kind of statements I would reply in bold all caps OMG YOU ARE NEVER A BURDEN I LOVE BEING HERE FOR YOU. This largely because I was so completely alone in a lot of ways when I was trying to figure out my diagnoses. I had loving friends and family, but had no clue how to medically advocate for myself as a young, female, chronic illness patient, which is a hard fucking job by the way. I mean it’s why we have such a strong online community, because so many of us were dealing with chronic illness isolated from anyone else with the same experiences. It just makes being able to connect special and important.

So I’m dedicating this post to you Regina Phelange, sorry you have POTS, not sorry we get to be super special chronic illness buddies. Also, thanks for driving me to and from my colonoscopy when we were both like 20 at college that was a lot of responsibility. I would like to publicly honor you for your service. 🤎

Sup with the whack PlayStation ‘sup?

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After a lil hiatus I’m feeling like I’m getting my voice back amidst everything going on in the universe, so let’s get reacquainted mmkay? I introduced myself nearly two years ago now and it was rather blah, so here we go again for anyone newly joining my readership, as well as the family and friends who read this and know me very well already.

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So I’m Alex (she/her) and welcome to The Illest, thanks for coming, wish I could offer more than the usual run on sentences, mixed verb tense, and occasional profanity, but you know, doing my best. If my Instagram led you here nothing will be very surprising. This is where I let my wanna be comedy writer alter ego loose on the internet. I also occasionally become reflective and serious about all that is life ill, because as Lil Wayne, the muse for this blog, says, Bitch I’m ill not sick.

The quick and dirty of my personal life isn’t much different than any other urbanite in their late 20s. I live in Washington, DC, USA, with my partner, he’s low key the best and incredibly supportive, more on him later. Although I don’t feel my job defines my identity, it is a big part of it. Being a teacher is a lot. Being an ESL teacher in a high poverty school, with kids going through immigration proceedings while also trying to learn fractions, is A LOT. But, ultimately I love it, my kiddos are the reason I get out of bed (almost) every day. The fact I get to wear fun clogs, and never do my hair or makeup because they DGAF is an added perk. Aside from gettin that (GF) bread as the youths taught me to say, I love plants and nature even though I get itchy AF. So indoor time is important with puzzles galore, Friends, Parks &Rec and Bobs Burgers, all of which the hubs also enjoys. We’re super exciting, I know.

That’s basically the bloggess behind the blog. I like to think I’m hilarious, so I hope you get some chuckles too, or maybe just smile I dunno. Read, share, shake your head in dismay. Do you!  Peace & Sunshine – Alex

New brain who dis?

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So I keep trashing and restarting this post and I’d venture a guess that it’s partially because I of course want to find the absolute perfect balance of humor and wit and all that crap, but also largely because this topic kind of freaks me the fuck out because it’s real and scary but that’s why I want and need to write about it. I recognize that is a hideously structured run on sentence. Don’t report me to the grammar police I just have a lot of feelings ok?

So back in my youth my brother used to tell people I was “freaky smart,” to explain why his little sister in 7th grade was taking the same high school math class he was. I was an overachieving nerd, he was normal, the “freaky smart” label stuck. Me and my freaky smart brain got along swimmingly, we skipped the 6th grade, won awards, came in 2nd in my class after spending my entire junior and senior years of high school on tramadol. (That experience is a whole other post in itself, not to mention wtf doc thought that was a good idea). Even narcotics couldn’t keep us down. All through high school and most of college even when my body failed me I still had my brain, my intelligence.

But alas, I think you all know where this story is headed, ha get it, head-ed. A little pun for ya there. Anyway toward the end of college which is like almost 6 years ago now, things started to get scary. It was around that time I really started to have neurological symptoms, and frankly I was terrified, because thanks to a few crappy doctors with terrible bedside manner I thought I was looking down the barrel of MS or another aggressive neurodegenerative disease. I had a slew of symptoms that pointed in that direction, tremor, vision issues, temporary paralysis, brain fog out the ass. So here I was a lone 21 year old sitting in waiting rooms of what felt like every freakin department of the Cleveland Clinic terrified.

Thankfully after about two years of diagnostics we ruled out MS, my issues were due to a craft cocktail of a few brain lesions, an essential tremor, small fiber neuropathy, and quite a few issues in my C-Spine. A cocktail I am grateful for, because at the moment it is not creating any more irreparable damage. Fingers crossed.

So where does that leave me and my freaky smart brain? Between the specifically neurological shit and the fibromyalgia, and the mast cell activation syndrome, and the hashimotos, let’s just say it’s a lot. If you look up the symptoms of all these fun diseases there’s a sneaky one called “brain fog” and at first it’s like what the fuck is that? Like how can my joints being inflamed or my thyroid being broken affect my ability to think? Well there’s all kinds of sciencey nonsense but in short: it definitely fucking does. I often refer to brain fog as having a “case of the stupids,” because quite honestly that’s how it feels.

Lately it’s been real foggy around here, which is what pushed me to write this post. It’s hard when you get to a point when you don’t feel like yourself, especially in your own head. I’ve come to terms with my physical limitations and low energy years ago, but this is a hell of a lot harder, especially for that “freaky smart” little sister. My brain doesn’t feel like my brain. I don’t feel intelligent or quick witted. I stare at work I used to be able to do and am just overwhelmed by it. I worry that this is just how things are now, but hope it’s just a rough patch and the fog will clear eventually. Either way I definitely have a chronic case of the stupids lately so sorry not sorry for my terrible sentence structure/tense agreement. I should be ashamed as an English teacher but YOLO.

“Coming Out”

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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

Give yourself some credit.

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In case you hadn’t noticed I tend to use humor to cope with the dumpster fire that can be life with multiple chronic illnesses. Becoming disabled around age 22 isn’t something you anticipate and well frankly after a shit load of other trauma prior to this mess, I find humor comforting because as I often say in these sort of unbelievable but somehow totally real moments I can either laugh or cry so I’m going to laugh. Since I do often turn to humor, ridiculous metaphor, and general sarcasm around my illness my medical providers have a fun time decoding it all in additional to my already complicated AF medical history.

This brings us to one of my favorite people over the course of the last year, my physical therapist. Now as a teen athlete with multiple surgeries, and then a chronic illness patient with multiple surgeries I really kind of fucking hated PT. It reminded me of everything I couldn’t do, everything I used to be able to do, and the fact the only time I was busting out my sporty spice outfits was to quite literally practice moving my neck a matter of inches under extreme supervision. I jumped practices a lot after being improperly treated, relapsing, you name it. Finally my rheumatologist suggested seeing a PT at their clinic for my joint hyper-mobility and neck cervical bullshit (thats an official diagnosis look it up). A little over a year ago when I started I was in rough shape, nothing but chin-tucks and gentle stretching here. Today, I completed a 20 minute “normal person” full body work-out with minimal modifications. I felt a little bit like a before and after infomercial and a LOT of that has to do with the words that come out of my annoyingly persistent but also wonderful therapist’s mouth every appointment which are, “Give yourself some credit.”

So if you’ve never been in physical therapy before there is often a lot of time for small talk, which of course depends on your therapists demeanor but it’s usually the case they try to be friendly. As you can imagine I can be chatty when provoked. My PT and I have been seeing each other twice a week for months and months so it’s safe to say we chat A LOT. So of course he knows all about my medical history as well as my general inability to keep my shit together. Some exchanges sound like this: “Hey Alex you find your fit bit yet that HR monitor would be really helpful.”….”Oh so you have the fitbit but not the charger?”…”Sure we can switch to a virtual appointment, definitely understand that you overslept since you set your alarm to 6:00PM.” He is a VERY patient man and also finds me hilarious so it’s a win/win.

Anyway, back to the point of this. I often joke about my various incapacities, and perhaps it was his lack of ever working with someone like me (ie sick & sarcastic AF), but he would almost get offended and basically never let me talk shit without also making me recognize to give myself some fucking credit. It was both the most annoying and most thoughtful thing because we often don’t have care providers who create space for both. Yes, you can 100% be frustrated with your body and your illness, but that doesn’t negate all the other great shit you’re doing even when it feels like you’re not. Every time I was there I was doing hard things, I was and am still pushing myself. We deserve to give ourselves some credit. Is my autonomic nervous system still TRASH? Yes. But I, Alexandra need to give credit where credit is due, that I’m making this disabled body work.

July is disability pride month and as an individual who is relatively newly disabled only in the last 5 years I don’t know that I have that much to say. Disability is term we should certainly own and take pride in, and that’s something I’m trying to do. Yet, as a fan of language I just can’t get past that prefix “dis,” it’s like rude or something. It emphasizes the “have not” of it all. So I’m trying really hard to focus on giving credit where it’s due. I’m so so so certain that at least like one of the 5 people that read this needs to give themself credit for something, so allow yourself to do it.

Just give yourselves some frickin credit.

Normal People Problems

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You know what’s weird? Being relieved when you have to have surgery to remove an organ. Lil confused? let me elaborate.

So at the start of the new year I was having some issues: chest pain, nausea, digestive difficulty, all kinds of shit. Naturally given the state of the world I was a little concerned as some of these are consistent with Covid-19 and other somewhat serious heart problems. Chest pain is always one of those things where it’s like do I need Tums of am I having a heart attack you know? I get in touch with my doctor and naturally she is concerned, she suggests the ER, but that would be a 7hr endeavor that neither of us thought was a good idea. I was slated for imaging and some labs and we were going to see what the hell was actually going on. Coincidentally the day I needed to go into downtown to get all this done, some IDIOT domestic terrorists decided to create a clusterfuck in DC. Lovely. Just Lovely.

Finally I get all my shit done, and we have gallstones, and I need surgery. I cannot tell you how relieving it was after this MESS to have what I would deem a normal person problem. Not something related to my chronic illness, not something rare, or incurable, or that will require years of trial and error with 15 different treatments. But a NORMAL problem fixed completely by a simple surgery. I was elated: a reaction neither the radiologist nor my surgeon were prepared for. But that’s the fun of being a complicated patient. Making medical professionals uncomfortable.

Ultimately my surgery was delayed due to the security measures placed in downtown Washington DC thanks to the IDIOTS, talk about collateral damage. Despite the mess, I was easy breezy going into this because I had so much confidence in the process and the outcome which is something so foreign I think for a lot of us in the chronic illness community. Doctors hardly ever come out and say, yes this will fix the problem. There is a minimal chance of issues. I am confident I can help you. Which honestly is a major bummer, but makes it all the more wonderful when it does happen.

My surgeon was lovely, we had matching clogs (always a good sign), and of course I was the “learning patient” of the day so there were hella students. The trainee anesthesiologist stabbed me 3 times with no success, poor kid. And BLESS the actual anesthesiologist who pumped my IV full of benadryl which made my post OP experience about a million times better. God I just love benadryl, I even have a little decorative bowl (one that you might put candies) out in my home that just has benadryl in it so I can pop ’em with ease. Ultimately recovery was a breeze and the problem is GONE. What a concept? It’s cray.

Anyway, thanks for making it to the end of my rambling surgery saga. The point of my sharing this is mostly just to highlight the fact that it is so bonkers to me the difference between an acute “normal person” health problem, between the chronic health issues I face on a regular basis. Just this magic of pain, diagnosis, treatment, done. It feels like that’s how healthcare should work, but it feels bizarre because that hasn’t been my experience for the past 15 years. I loved having a for lack of a better word, “normal” or routine issue. Granted this issue caused an incredible amount of fallout in my other systems, cuz inflammation, but I’m going to take this one as a win.

Note: I had multiple appointments, medical deliveries, and my actual surgery delayed or cancelled due to the actions of the Capitol Rioters, and I don’t know your politics or how you’ve ended up on my page, but I was lucky this wasn’t life threatening. However, for some people it was and they didn’t have access to care. Collateral damage you don’t really think of.

Prove It

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Many stores have responded to Covid-19 but putting in place special shopping times for community members that need a little extra consideration. Examples of those type of people being seniors, pregnant women, people with disabilities or otherwise immunocompromised. This is a solid thing businesses are doing that they don’t have to, and none of what I am about to say is in any way contrary to that sentiment. I am grateful for these accommodations because safety and sanity are my top priorities right now. With that, now let me tell you about my morning.

I needed to go to Costco. I try to have my husband go, but they were out of things we needed when he went, and when you have IBS and MCAS you just can’t risk running out of toilet paper and generic Benadryl. So I decided I’d venture out on a quiet Wednesday morning in hopes things would be in stock and not too crazy. From the minute I woke up I could feel my anxiety buzzing, even though I triple checked the website that it was the elderly AND disabled all I could think was, what if someone asks me why I’m there? what if they make me prove it?

About 90% of my illnesses manifest invisibly. I really only have a few symptoms that say HEY! Look at me! I’m sick! So knowing I would have to stand my ground in line while a bunch of old people stared at me like, wtf is she doing here? was stressing me out BIG TIME. I knew since it was a going to be upwards of 90 degrees I was going to bring my cane for stability, POTS related dizziness etc. Which sadly was the only thing I was kind of holding on to for peace of mind as some kind of symbol to say, I deserve to be here. Who is going to question the 27 year old with the cane?

But isn’t that kind of fucked when you think about it? I shouldn’t need some visual manifestation of illness or disability to prove to a bunch of strangers that I am in fact ill or disabled. I am just as fucking sick on days when I don’t need a mobility aid, my diagnoses do not magically change. There are also hella young people who are living disabled and chronically ill that don’t need mobility aids but very much need to shop during these special times for their safety, so that creates this issue of society wanting us to prove it. It’s the whole “But you don’t look sick” complex we battle against every day, or the “you’re too young for all those problems” line I’ve heard SO MANY TIMES, well you know what Ethel I have them so what the fuck now?

So here I am rolling up to Costco sweating balls, partly because I always am, and partly because of all this anxiety that I don’t look sick or disabled enough for the general public to accept me. I mean I am used to stares. We all are. We wore masks before Covid-19 was a thing, I use a mobility aid and am under 60. But let me tell you these Senior citizens were obvious AS FUCK. More obvious than my 10 year old students when I brought Sticky to school. Just validating all that anxiety, and I’m just trying to stand my ground, wobbly, but standing nonetheless.

The kicker was at the entrance when I was asked if I was someone’s escort and I nervously replied, Um no, I thought this time was also for the disabled and immunocompromised ? [Shamelessy being like here! Look at my cane! It’s real!] The Costco worker at this point was majorly backtracking and said, “Oh yes of course ma’am, there is a different line on the other side usually, but you good!” To this I am thinking, FOR FUCKS SAKE! Would it kill you guys to have i dunno a sign with some goddamn arrows?, but instead I politely replied that I didn’t know it was my first time coming at this time.

So I’m giving you all this play by play largely just to say that it’s some bullshit. We know disability can be invisible. We know it can impact anyone of any age. We know all this stuff and yet here we are, and it just sucks that you can’t go to the store during a time DESIGNED FOR YOU, without feeling like an anxious mess like you’re cheating some system. Maybe this is just me, and maybe I need to just own it and not give a shit. But it was in the back of my mind the whole time, what if they turned me away? Can they even do that? I don’t like feeling like I need to have a mobility aid or a bad tremor day for someone to believe that I have a disability, but that’s the fight we’re in sometimes. And welp, it’s fucking bullshit man, and that’s what I came here to say.

How do you cope with the haters and anxiety in situations like that? Drop some comments here or on Instagram @the_illest_blog! Thanks for reading my mess

Back the Fu** Up

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You can do your best, but the moment you step outside you assume the risk of everyone else’s actions.

Back when my now husband was just some cute classmate of mine at university in Santiago, Chile, he had a penchant (still does tbh) for graphic tees. So these t-shirts would say all sorts of stupid shit, and I was always like come on man, really with the graphic tees? Mind you all of them were in English, and my husband’s English was not fluent at that time, and these shirts are somewhat NSFW, making them even more bizarre in the context of 2010’s Chilean fashion. But there was one shirt to reign them all, which I just couldn’t stand. It was a white tee, with a large graphic of the back of a semi-truck, and in red and black block letters said “BACK THE FUCK UP” and you guys when I saw this shirt I was just like… why? Why is this even on a shirt, why is it in Chilean stores? Why did this otherwise intelligent young man buy this ridiculous and profane shirt?

Throwback pic of my husband with “the shirt,” lovin the pose right?

So this dumbass shirt has always been a joke and point of contention in our 7+ year relationship. I even went so far as to tell him not to even bring it to the US to my apartment, it was serious.

Now why the astro-fudge-brownie am I telling this story? Well this shirt is my new motto. BACK. THE. FUCK. UP. The whole Covid-19 thing has me feeling some type of way, and so many of these feelings end in just frustration, anger, or a felling of helplessness. I’ve already posted on my Instagram briefly about being a vulnerable or at-risk person, and let me tell you everything that comes with that label is heavy as FUCK.

Some of us still need to leave our homes for ongoing medical care, it just isn’t an option not to. I suit up, mask, hat, sanitizer for days right? I do my best, but the moment I step outside I’ve now assumed the risk of everyone else’s actions, and the other day these people were just getting way too close to me, fucking CLUELESS. Guess what I wanted to shout in their faces? Back the FUCK UP! Like where is that damn tshirt now?! I desperately need my 6ft radius bitches.

Should we all be wearing these tees? A staggering number of people don’t seem to give a shit at all. It’s truly unbelievable the actions people have chosen to take in this situation with regard to endangering others health and safety. I don’t know if it is because I am school teacher, but adults choosing not to follow simple instructions makes me so mad. I want to call their grandmas and take away their cellphones for a week just like the 13 year olds in my class. Like “Excuse me Spring Break Brody, in this community we DO give a shit about the well being of others so if you’re not going to get it together, we’re calling mom, and no more White Claws or iPhone until you can show our community you can use them safely.”

Ugh….I feel like I need a major a Tina Belcher style “ughhh” after thinking about some of this stuff. It makes you want a T-shirt emblazoned with “Back the fuck up” just so that’s one less thing to remind yourself and others. Sadly I don’t think the shirt is still for sale, and the original is behind closed borders in Santiago. Rats.

To all my other vulnerable readers, and everyone else I hope people respect your space, your safety, and your health in this time of crisis.

Word of the Day: Comorbidity

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comorbidity

  • noun: the simultaneous presence of two or more chronic diseases or conditions in a patient

    • The first time I heard the term comorbidity, I thought to myself good god what a terrible sounding word! And as a teacher of the English language to people who speak other languages, who happens to also speak Spanish, I know a shit ton of fucking words. I really demonstrate my masterful use of vocabulary on this blog, don’t you think? Just so very eloquent and a sophisticated approach to narratives on life with chronic illness.

    Anyway, back to our extra special word of the day: comorbidity. So this word is more or less as shitty as it sounds because when you break it down (have to practice what I preach and make my 4th graders proud) we have the prefix co- meaning together, and morbid meaning deathly, diseased, all around bad situation. The concept of having multiple diseases simultaneously is bullshit, and like I or about a zillion other chronically ill people can tell in reality it is also…wait for it…bullshit. The notion of managing multiple diseases at the same time sucks, a lot.

    The funny thing about comorbidity, (and when I say funny I mean hilariously tragic), is that a bunch of diseases are NOTORIOUS for showing up together. They are like disease #squadgoals if you will, when one rolls up, the others tend to follow. It is as if they have a group chat and POTS asks Mast Cell Activation Syndrom is they’re gonna come thru at this party, and once MCAS says yes, then all of a sudden Elhers Danlos also decides to come thru, and maybe bring some other friends, because they heard it’s going to be LIT. (My students really keep me up on the slang, can you tell? Lolz)

    So, I chose this as our very special word of the day because after visiting my new rheumatologist, which is an experience that deserves it’s own post (positive one yay!) I have been confirmed to have the common trifecta of MCAS, POTS, and hEDS. For right now, we’re sticking with the hyper-mobile type, although I do have undetermined connective tissue disease, still have a few too many question marks to head into genetics just yet. It was funny in the appointment the doctor referred to this EDS type as “benign connective tissue hyper-mobility” and I wanted to be like…DA FUQ? Did you just say benign literally every joint in my body begs to differ. But, alas I did not, I listened carefully and prepared more “productive” questions. It’s just mind-bottling as my Friend Joey Tribbiani would say, that because no irreparable harm is being caused by the immune disorder it’s self and only it’s secondary effects it would be considered “benign hyper-mobility.”

    Anyway all this to say, I’m totally comorbid, (don’t think that’s a word though), even more so than before but that’s chronic illness life for ya.

    Well that escalated quickly.

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    I had a somewhat rough realization while traveling today, that felt like a fucking oversized carry-on shifted in flight and clobbered me the second I opened the over-head bin. Now, I know I have sprinkled some tidbits about my travel escapades here and there so far, but for the purposes of really getting into why I’m making poor similes about luggage to explain my feelings, I’m going to give some background.

    Basically since I could climb stairs unassisted as a wee one I’ve been rather independent, what child puts herself to bed when tired? Bizarre, I know, but I’ve always made things happen for myself if I wanted them and travel was no exception. From like age 3 be it weekends with grandma, slumber parties, to weeklong camps, whenever I bid my mom adieu it was a “Bye Felicia” situation, my wonderful mother who I love dearly being Felicia in this case, my bad.

    So with such a history of being unbothered by the solo journey the older I got the more I sought out these kinds of experiences that just pushed me further into realms I didn’t know, and I loved it. Not to mention I ended up focusing my degree in Pre-Colombian Art which is basically everything before the “discovery”(which is a term I think is a load of shit) of the Americas, AKA the PERFECT excuse to run around the deserts, mountain tops, and jungles of central and South America. All this to say in my 27 years I’m pretty good at traveling and doing it solo.

    That brings us to me feeling some type of way in seat 15A of Delta flight whatever because I definitely did not feel like a well seasoned passport-all-stamped-up jet setter when I got on that damn plane. I just felt like someone who was out of breath, tired, and a bit embarrassed for holding up the line. The plane was a smaller one too so the aisle was harder to maneuver with my carry-on and bag o’ drugs (medical bag) plus carrying/lifting. By the time I got to my seat I was huffing and puffing and could’ve blown all the three little pigs homes down. And I was just sitting there thinking to myself, fuck since when did this get so difficult?

    The whole thing was basically what you’d call a rude awakening, because before that moment I had never for a second considered I wouldn’t be able to do things independently. Sure on bad days I use my walking stick and like to make sure I’m not home alone for showering, but outside of that and standing on ladders I was good. Because of the excellent care of my home health husband, I haven’t had to travel, get groceries, or even really go to the doctor alone in months. During those months my body managed to seriously sneak up on me.

    I don’t know how to do life independently with this body yet. I still manage to somehow drop my walking stick whenever I need two hands for something. I need to figure out what kind of bag I can carry that won’t further fuck up my neck and get in the way of my stick. There are just so many things to consider and modify, then you add regular life stuff on top it’s so much my brain hurts more than normal.

    There is a serious learning curve with this whole chronic illness shit, and I’m struggling to keep up. But you know what? I’m just doing my best. Sure I kept bumping everyone in the aisle seats of the plane with my bag, but guess what? I was just doing my best. It is going to be a messy process, I have a lot to learn and for now my body feels like chaos. So sometimes I will take more space in line, go slower, or drop something, but I’m not going to apologize. Because just like Drake says, I’m doing me, I’m living life right now, and this is what Imma do til it’s over…over…but it’s far from over.

    Two thousand and what now?

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    You guys! What the hell? It is now our good lords year of two thousand and twenty, which we will all call twenty twenty and our nations children will further struggle to read numbers greater than 999.

    2020 marks a fun lil’ anniversary for ya gurl because it marks a decade of “OFFICIAL” chronic illness. ‘Twas back in 2010 in the office of University Health services, where I went after some rando dude at a party stepped on my foot and presumably broke it, where I was first denied an X-ray because university insurance didn’t cover it, ah the irony, and then after a brief discussion of my overall health or lack there of with the University Health Services doctor, I heard it uttered for the first time: fibromyalgia. She gave me a little blue referral slip and I was like whatever lady, and went on my merry way with a rather serious limp on what was definitely a broken foot that was never treated and yes, does bother me to this day. (Was that the world’s longest run on sentence? Maybe). Little did I know the importance of that lil blue referral to rheumatology would start such a saga. I’d had all sorts of issues, mostly orthopedic, prior to this fateful day, increasing in severity since about 2007. But no one ever said, huh, you know what, this appears to be a connected pattern of events, perhaps a disease of its own, let’s name it chronic illness! So in essence from that moment began the long arduous journey that brings us to present day, 2020, the Illest.

    My motto, it’s fine, I’m fine, yes really I am, I. AM. FINE.

    Many people have a diagnosis day, where someone definitively told them, this is what is wrong, this is what it’s called, here’s your drugs, bye. Given how I’ve spent the last ten years, it feels like a fucking diagnosis decade. I look around at my peers and it’s like, those Facebook posts everywhere sharing milestones and 10 year challenges, shit I really shouldn’t be looking at, I know better than to compare my experience to others by now. But it’s hard man. It’s hard, especially when the past decade was consumed by health. My milestones don’t feel the same; they were born from necessity in so many ways. I’ve been doing what I’ve had to just to keep shit together, as is basically anyone who is chronically ill.

    So as I go into a new decade of being the Illest, I’m not super sure what my mentality will be. 2019 and its 9 predecessors were rough on me, but not without moments to be grateful for. Trying to stay grateful this new year. We’ll see how it goes.