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.

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.

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.

Fear & Ablating in Washington, DC

In my experience most people battling chronic illness and disability aren’t super fans of the word “normal” largely because it has that implicit abnormal attached to it. And let’s face it we tend to fall into that second category if we’re basing this on how our bodies and immune systems are “supposed to” function. For quite some time I’ve fallen into that abnormal category, with regard to how I have to go about living my daily life to manage my illness and make it from one day to the next in one piece. A day in the life of me, Alex, does not in anyway resemble what you would picture if I said “typical somewhat quirky adventurous 27 year old in a major US city.” I’ve been forced into a different kind of lifestyle dictated by my health. This is just my new normal, or what my doctors call a “baseline.” Which is a nice way of saying the level of shittiness you can tolerate and your docs are OK with you dealing with day to day. Over the past 15 years that level has changed drastically, and not in a good way.

To quote my beloved Joey Tribbiani, I’m so far over the “normal” line it is in fact a dot to me.

It’s when I start to wax nostalgic on the days of only taking like three medications, or like just having one doctor that I really think about how much has changed and how much I just now accept as “normal.” That’s where the fear and anxiety start to come in to play. Have I mentioned how good they are for my other medical conditions? Suuuuper beneficial. 

Recently I’ve undergone some spinal treatments (nerve ablations for ya nerds) to relieve some nerve pain in my neck. I have had herniated discs for years that just royally fucked the situation completely and the surrounding nerves are in almost constant spasm as a result. It feels WONDERFUL. So, these treatments essentially burn up some of the key nerves causing the issue in the spinal joints, no nerves, no pain? That’s the idea. My doc was pretty confident about it’s potential given how debilitating my neck/back pain has gotten in the last year or two. So here I am a couple weeks out from the procedure on the right side and a few hours out on the left, and yes I’ve noticed some difference with the pain stemming from the joint. However, the trauma to the skin, muscle tissue, and other nerves from the procedure has left  me with some fall out thanks to my small fiber neuropathy, fibromyalgia and MCAS. Part of me wants so badly to just think ok it’s healing, it’s recovering, “you’ll experience some increased pain for 5-6 weeks, that’s totally normal” this is temporary, this is “NORMAL”  but another part of me has this sinking feeling it may not be,  because spoiler alert when was the last time anything ever was normal. I’m thinking to myself, wanting to blurt out, “be honest with me Dr. Pablo*, is what is going to be normal for me or  normal for the lady who was in pre-op ahead of me who said her pain was a 0 and a 2 with rigorous movement, and  had no other medical issues, because yes I was eavesdropping, which I know I shouldn’t but I’m the odd man out here, because let us remember I’m the person who’s body doesn’t even heal properly in the first place.” But of course, I did not say that to Dr. Pablo, because 1) I was catastrophizing a lil bit there, and do need to give my body time to get it’s shit together, not comparing it to others, and 2) Dr. Pablo responds to the hospitals online messaging portal which is truly amazing so I can bombard him with these sort of semi-rational concerns there.

It can be such a brutal realization, especially when you hope and hope that a treatment will work, or something will get better that this is just how things are now, this is the new baseline, that even before my body can heal I’m prepared for the worst, because that is my normal and has been for so long. Because  at some point you need to pay rent, you have to move forward, and figure something out. With illnesses that doctors are still figuring out like Mast Cell Activation Syndrome, fibromyalgia, neurological illnesses, and others, it’s not uncommon that even the best physician you can find may not be able to do any more than give you a somewhat bearable baseline with symptom management. And you know what? That is fucking terrifying when your symptoms only get worse. Autoimmune disease  is often progressive, the disks in your spine degenerate, brain lesions grow, those arthritic joints just keep getting creakier. You see the hashtag #chronicillnesswarrior so often or “warrior” tagged onto various other illnesses, and its so true, we have to not only fight these illnesses but try and protect ourselves in the process, physically and emotionally. That that is fasho not normal at all the last time I checked.

If you know someone going through any kind of chronic health battle, just be there for them. It’s scary and insanely difficult, and they’re probably only sharing about 25% of what is really going on with most people. We don’t need suggestions, advice, what cured your one aunt that had arthritis. Just need friends and family to say “fuck dude, that is really tough I’ll keep you in my thoughts” or “Oh I’m sorry you’ve been having a flare, can I bring anything over?”  It’s that simple folks!

Look out for my next post on how to efficiently pack your hospital belongings bag! This is because my pre-op nurse told me I have a special talent for it soooo super pumped to share! lolz

*Names changed to protect the anonymity of my beloved neck doctor, find you a doc that texts you back, it is EVERYTHING.

“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.

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. 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 illness 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

Word of the Day: 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.

    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!

    *In Rihanna* Work work work work work

    As if starting two new neurological treatments in August and September weren’t enough what else is back? You guessed it! We are back to school in full swing for nearly 10 weeks now. Lots of quality instructional time with my favorite lil gremlins. What a joy. Truly.

    Can you sense the sarcasm?

    No, no, no I kid…Mostly. I do very much love my job, (for my principal: if you’re reading this please never make me leave I love our school so much), but man the transition is always tough. Transitions in general are challenging, then add all kinds of other obstacles, and damn it’s like how did I manage to even get here?

    I had been kind of dreading returning to work this fall and building it up in my head since like May. I probably mentioned before but this spring I had a real rough go of things and had to take medical leave from work. Much of which left me with some procedures and ongoing treatments that will have me out throughout the fall and winter. Although I am legally protected in all this and understand I need to take care of me and blah blah blah, it’s still something I manage to feel HUGELY guilty and self conscious about. Even now as I need to take time for ongoing treatments I feel guilty, which is objectively nonsensical. Why on earth should I be the one feeling bad when I am also the one getting 32 needles to the head? It’s just such an irrational complex that for whatever reason I haven’t been able to shake.

    I think those feelings go hand in hand for a lot of people with invisible illnesses and disabilities, or chronic illnesses in general. It’s like this “it’s not that bad” complex. Between worrying what everyone else thought about my medical leave and wondering if I really was going to be well enough by this arbitrary end of summer deadline and how the new treatments would go, the anxiety was nice and high, right where I like it. I hear it’s good for my other conditions? I wanna channel my inner Rihanna and just not give a fuck, but it’s inevitable to be confronted with so many little decisions throughout the day that you have to think, hmm well how will my illness impact everyone else in this situation?

    Working with a disability especially of the invisible variety is to put it plainly challenging as fuck. Things simply are not designed with this community in mind. Leave policies, building structures, hours, even shit that is supposed to be celebratory like bruh, I have never been able to eat any staff birthday cake or complimentary breakfast spread without some kind of allergic reaction or serious gastrointestinal distress. My primary care doc always gets on my case about my job, like is it really the best environment? I mean sure a Title I, Urban DC school might not be the best place for someone who is not only immunocompromised but also incredibly sensitive to environmental triggers and stress. Like ok whatever, but my teachers union insurance is duh bomb and I love the kids so what do you want from me?

    It’s so weird being in this limbo between healthy enough to work without a shitload of issues, and so disabled to not work at all. I feel myself drifting between these poles and it is beyond impossible to 1) explain this to your HR department and 2) really know what’s the best foot forward for myself most of the time. I also have this creeping feeling that decision will get made for me pretty swiftly once my symptoms reach a certain point, and well I kind of want to squeeze the most out of this time I can.

    For any other spoonies, out there trying to keep working holla at me. How do you cope? What works for you? I have literally zero idea how comments work on here, but will try! And am always responsive on Instagram @the_illest_blog ✌🏻🌺💛

    Caps? Shmaps! I’ll just spill my pills

    You can tell a lot about my week by what “the Gang” aka my collection o’drugs looks like come Sunday night. Some Sundays I find them neatly chillin on my windowsill where I last left them the Sunday before waiting to be neatly sorted, and other Sundays I find this. Opened bottles all over the apartment, pill organizers on the floor, 5 unopened packages from CVS mail order, and not knowing where the fuck any of the lids are. ⁣

    This picture is what a flare week looks like. It is the result of survival mode, a useless right eye, no mental wherewithal to keep track of what to take when, and only having the energy to take the tops off once all week because well that’s just how it is right now. ⁣

    And you know what? I’m doing my best and I’m sure you are too so just go out there and be #theillest because pill bottle caps are overrated and spilling your meds everywhere is cool.⁣ ✌🏻✌🏼✌🏽✌🏾✌🏿 ⁣⁣

    ***posted here from the gram was being lazy #spoonshortage

    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)