Welcome to the Club! It low key sucks.

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?

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

Prove It

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

New brain who dis?

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”

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

No that’s not how it works…

So I have been laying low during this time we’ve called 2020, aka a global pandemic with a racial crisis chaser. Just a lot fucking going on and not much will to put my fingers to the keyboard and tell you how I feel about it. Alas, here were are and something idiotic enough happened that my buttons have been pushed enough I need to rage about it just a lil bit. Hopefully someone may learn something from this post, maybe not, but at the very least I will feel a tiny bit better for having said it.

Here goes: You have probably noticed a few yahoos running around (the US largely) refusing to wear masks claiming they are an infliction upon their civil liberties. To this I have many replies, the first being are you fucking kidding me? However, these individuals are just not having the slight inconvenience of 25 square inches of fabric in front of their face and man are they mad about it. As a chronically ill person, like much of my tiny fan base, we’ve been mask wearers long before #socialdistancing was trending, so the idea of not wearing a mask to protect the health of others is not only beyond selfish but also just annoying considering we’ve been doing it for ages.

But you know what really grinds my gears about this vocal group of idiots? They have decided to claim health conditions that prohibit wearing a mask, citing the Americans with Disabilities Act and threatening action from the Justice Department, making fake cards to intimidate business owners. I more than anyone as a member of the disabled community know and recognize there are many conditions that prohibit wearing a mask, that’s legit. What is far from legit are these individuals using the ADA to avoid wearing a mask in public because it’s quite frankly bullshit and I’m going to tell you why, but feel free to still come at me in the comments.

One of the primary notions of the ADA has to do with reasonable accommodations, and if you’ve lived with a disability for any amount of time you probably know quite a lot about this. You’ve also probably fought tooth and nail with your employer or landlord for a basic accommodation providing a shit load of highly personal medical documentation. You know what is NOT an example of a reasonable accommodation? Entering a grocery store without a mask because you can’t (or won’t because you’re an asshole) wear one. That endangers others and you. A reasonable accommodation would be delivery or curbside service. Oh wait!! Businesses are doing that!

You know what else makes this bullshit? If you have any shred of medical knowledge or even basic understanding of how the body works, if you truly have a condition preventing you from wearing a mask, I would bet what little money I have you are probably high risk too since Covid-19 is pulmonary in nature. So your ass shouldn’t be out amongst the masses mask-less anyway.

Sure one could argue with me about how a mask impedes your free will or whatever bullshit, but do NOT use the ADA for such corrupt means because every fucking day real disabled individuals have to fight for even the most basic accommodations. Meanwhile selfish assholes are running around endangering the mask-less pleading disability because of a minor inconvenience. It’s the ultimate case of the privileged crying wolf at the expense of some of the most vulnerable in our population.

So, No, to you Mr. or Ms. “But I Have a Breathing Condition” that’s not how it works, try considering the reality of someone with CF right now, or EDS, or undergoing chemotherapy. Don’t drag our rights through the mud because your face gets sweaty and your glasses fog up. Again that’s not how it works.

Back the Fu** Up

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

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.

    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?

    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.

    Healthcare Hacks: Patient Belongings Bags

    Updated with photos: FINALLY

    Prior to my rather sedentary existence in recent years, I was somewhat of a wandering nomad. Never really caring to stay put, accrue things like furniture, or live anywhere more than 6 months to a year. Travel and adventure was kinda my vibe, thus I am very very good at packing. Coincidentally I am also very good at Tetris and overloading the dishwasher. Today, I bring you the first of a series I’m calling “Healthcare Hacks” because alliteration makes everything more fun ok? Ok.

    Just a heavily filtered snap from your author, contemplating just how much time I spend on GW’s Health Campus

    So last week I go in for the fourth time to the outpatient surgery center to finish a treatment being done on my cervical spine. The nurse gives me my gown and shit and leaves me to get situated, which takes all of 30 seconds given everything I’m wearing is stretchy. The nurse, impressed by my speed, remarks that I must be experienced. Not sure if she meant in undressing in general or in a hospital setting, let’s hope the latter…although if we’re being honest here I am a speedy stripper, anything to get me into my jammies faster, am I right? So after a potentially offensive stripping remark the nurse takes notice of my belongings bag, which is placed neatly at the foot of the bed. I WISH I had visual aids but inside are my clothes of course folded, then inside their own bag within the larger bag are my shoes, virtually heremeticly sealed apart from my cozy clothes.

    **UPDATE: Finally have pics for ya, enjoy this groundbreaking discover

    This my friends the nurse thought was a true stroke of genius. Never before seen groundbreaking stuff for this woman, who just loved my somewhat obsessive attention to detail when it comes to packing…even in pre-op. I was both honored and also like, woah I’m here too much. You may be thinking, why are you even writing a whole post about this. Well fuck that attitude, because any little thing that can improve a trip to the ER or the surgery center or wherever matters. It felt so nice knowing my shoes were sealed in their own belongings bag and safely tucked in with the rest of my stuff in one bag. You know why? Because it’s one less thing to lose, or get caught in the bed, or fall off. (Last time they dropped my water bottle and broke it, I’m still pissed but trying not to hold a grudge. It wasn’t in a bag so shared culpability? Perhaps).

    Can you guys tell my brain fog has been bad lately? Struggling to write in complete sentences. But alas: In summary the key to personal belongings packing is: The Bag within a Bag Method , keeps everything in one place and prevents cross contamination of clothes and foot stink. Hooray!

    Again I am so terribly sorry there are no visual aids, I’ll snap some for next time!