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)

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Oh you made plans? That’s cute.

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

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

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

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

PILLS, Baby!

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

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

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

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

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

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

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

Insomnia: Can’t Stop Won’t Stop

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

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

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

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

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

The Get Well Card

So I wrote this post a while ago and then fell unfortunately quite ill again never making it “back” to work, so it’s a little out of context but wanted to share it anyway.

Woof. This is a doozie but just happened and has me feeling all kinds of ways, and I should write about said feelings yes? That is generally the purpose of blogs right? Right. So let us dive in: the past almost 3 months or so the struggle has been real, pretty incapacitating shit, flaring on all cylinders you know the drill. This fuckery on behalf of my immune system, resulted in me needing to take some considerable time off work, which I hate for a host of reasons but that’s not the title of today’s post so I’m not getting into it. I am new to my school this year, after leaving my previous teaching job due to how my illness was handled, so mucho anxiety surrounding the whole thing.

Today was my first day “back” though I had a few false starts and relapsed which sucked because of the welcome backs, anyway I digress, and I was of course greeted with lots of love from my kiddos who don’t get the whole chronic illness thing they’re just like, “hooray you’re better!” And I’m like, “hooray sure not really but it’s fine yay!” As well as the usual “Good to see you,” or “Welcome back” from my coworkers. However the surprise came in the form of a simple envelope with my name on it containing a “Get Well” card signed by the whole staff.

So at first I was ready to just burst into tears because I think that card with all those names felt like some kind of validation that as someone with a virtually invisible illness you never get. It felt like them saying we see your struggle and we support you, and that was fucking monumental. I still haven’t even read all the nice shit people said because I’ll cry and then flare up and it’ll be a whole mess. My own husband can’t even say nice things about me without me blubbering let alone my professional peers? Fuck.

But for some reason in the back of my mind along with this amazing feeling of support and validation I had a familiar twinge of bitterness. As I’m sitting here looking at this sunshine-y bumble bee and the bright flowers on my card, I read the sunny yellow letters, Get Well Wishes…there it is. That familiar twinge of bitterness did have a reason. It’s those those two words that always seem to find us Get Well. This is one of those things much like the phenomenon I mentioned when discussing my tremor, it’s always well intentioned but it’s also kind of really grinds my gears ya know? I have no idea who bought the card and the extent to which they knew my health situation so this instance didn’t bother me but, even some of my extended family members still say shit like Get Well Soon, and I want to be like bitch do you know what chronic  means?

For so many of us there is no permanent well, or all better or cure and it’s one of those things where at least I’ve found you really have to teach people how you want to be treated. Like hey maybe don’t say “Get Well soon” to a patient with a disease they’ll have for the rest of their life. Not cool bro, not cool. Maybe say “I hope you can feel a little better” or “get some rest.”

The card my coworkers got for me really shows where things are for a lot of people with chronic and invisible illness. It was validating and acknowledged my experience and showed support. However things still aren’t quite there yet in terms of knowing what it means to have these illnesses. When I say autoimmune disease in the break room people are like, “wait…what?” and every time I have those welcome back hugs from my kiddos and chats with coworkers and then relapse and have to extend my leave, I know people don’t totally get it. But nonetheless my sunshiney bumble bee card is proudly on the fridge because semantics aside I am truly grateful for the intention and show of support from my school. Thinking of my team and the faces of my kiddos keeps me going, here’s to hoping I “Get well soon.”

“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

Special Skills You Can’t List on Your Resumé Pt. 1

Sorry in advance I didn’t have the spoons to find perfect hilarious pics/memes so this post is naked.

The whole illness thing is often an inconveniencing major bummer, but I like to look on the bright (or at the very least tragically humorous) side of things and ya know it’s really not all doom and gloom. In that vein I thought I’d share some of the special skills that my 10+ years of being the illest have afforded me. They would likely be frowned upon on my resume, though I low key wish I could put them on there because some of them are clutch.

1) Public Restroom Savant: Ok so you’re probably like where is this bitch going with this one, but bear with me here. This was something my brother actually realized before I did, but given my frequent bouts of digestive distress, I know the location of the restrooms in literally every store, bar, cafe, bank airport, supermarket, theme park and residence I’ve ever been. Domestically and abroad. I also know within certain locations, say the Target near my mom’s house for example, where you can find a secluded private restroom apart from the others if you’re “in a bad way.” This vast knowledge has also allowed me in new locations to extrapolate my existing data (flexing that one statistics class I took) and apply it to the new locale. Someone always has to go, it’s just nature, and you know who is incredibly valuable? The person who knows where the fuck the bathroom is. I rest my case.

2) Amateur Mobile Pharmacist: At any given time in my various bags, jacket pockets, blankets, and wallet you can find pills. Disclaimer they are all medications that have been prescribed to me etc. In addition to the Rx drugs, I like to have a nice collection of backup/supplemental over the counter varieties because you just never know. The bag I take to and from work is filled with so many things my coworkers once tried to guess weird shit trying to stump me as a happy hour game. I won. Anyway back to the pills, so quickly knowledge of my collection of pharmaceuticals spreads, I mean the demand for ibuprofen and excedrin at a middle school? Crazy, always have it in stock. Need vitamin C? Got it. Benadryl? Of Course. Hydrocortisone cream? Most def. At the end of the day it’s really a public service.

3) Yes, You Bet your Ass I’ll Hold: Now this one which is essentially a superhuman degree of patience and tolerance for administrative bullshit is the closest to actually being a real marketable skill and does come in handy when working with my gremlins students. This patience comes from years and years of training, building up my endurance, and believing that I in fact was the next caller and that the doctor would be right with me. Well jokes on them because look at me now. You think I won’t wait on hold for 45 minutes to make you talk to me Mr. Electric Company Man, oh because I will. You think I won’t fill out this 4 page claim to get you to cover my carpal tunnel wrist brace? That $18 is two months of Hulu brah. I have found that the secret to getting the service you want is being willing to wait a fucking long ass time on the phone or fill out bullshit paperwork, something millennials definitely don’t do. Life hack people. They’re (the man, big pharma, the place you’re tryna get reservations) counting on the fact you’ll give up. And with the years and years of being on hold, who knew I was also becoming a better educator because having way more patience than you ever thought possible is coincidentally the key to that too.

I don’t know how proud of these skills I am (ie #1) but living life ill definitely makes things more interesting. I’m certainly not running marathons, and I’ve forgotten my own birthday at the pharmacy but if you need an ibuprofen, don’t know where the toilet is at ikea or want someone to badger the insurance claims department for weeks on end: I’m your girl.

What hidden talents have grown from your time putting up with the endless bullshit of chronic illness? Are your special skills equally inappropriate? Do tell.

Lying to my Mother and Other Loved Ones

In honor of this Mother’s Day I thought I’d give a little shoutout to the woman that has been with me on this journey since day one, paid for a lot of it, and may be even more emotionally taxed by it all than me, my momma. Although I have an incredibly close relationship with my mother, non traditional family structure, etc. I find myself lying to her the most about how I am at any given point time with regard to my health. And she definitely knows it.

Ross Geller the polarizing paleontologist from “Friends”, who is def NOT fine.

Much like in “The one where Ross was fine” when you have loved ones so invested in how you are you want to be fine to lift some of that emotional weight we know they carry. Even though, like Ross, a lot of the time we’re definitely not fine. Now this kind of lie or “pretend fine” is totally different from when some rando asks how you are and you know they couldn’t give two shits so you just say, “oh yeah I’m fine” because they don’t want to know. This is different it’s a loving lie.

I think when you’re in this kind of dumpster fire of a health situation for a while one can err on the side of glossing over the gory details. I know I find myself doing it all the time even at the doctor, like “How are you?” I reply, “Good thanks,” what the fuck? No! Why did I say that? I’m not good. Even more so with our family and loved ones it’s like you don’t want to be a perpetual bummer to create more worry and concern. So it’s “yeah, I’m ok” or “oh I’m just having a little flare” or “it’s nothing just a little inflammation” all of those most likely translating to something a hell of a lot shittier.

It’s all these little subconscious lies and understatements that I find myself saying, because I worry about other people’s worry. Which brings me back to my mom. She has started to really catch on to this habit and our phone calls are often comical interrogations of if I’m actually fine or Ross fine (we really love Friends if you hadn’t noticed), questions about incriminating instagram likes with regard to my insomnia, to reminders about inflammation causing non AIP diet friendly foods seen in my snapchats. I love her tenacious and unwavering commitment to my care and am so thankful to have someone with google alerts for every one of my diagnoses. Have had to explain the whole Jewish mom thing to my primary care doc when I come in with a page of prewritten notes and follow up questions.

Yet, behind all the practical solutions, long phone calls, always answering a text with the perfect gif when I’m bumming hard, I know there is a huge emotional weight, and this applies to a few people closest to me but she’s the OG. So I find myself wanting to say, “oh yes I definitely got 8hrs of sleep last night” when in reality it was, “my back was in spasm so I laid on my kitchen floor and got about 2.5hr of non consecutive sleep.” Because lezbehonest what mom wants to hear that? NOBODY. But being the OG she outsmarts me every time and finds out one way or another. I’m thinking she has a mole on the inside in the form of my husband/home health aide.

Just one example of the multitudes of gifs my mother has sent me, who doesn’t love a penguin with an IV when I was also at the hospital with an IV?

I guess as much as I and perhaps other chronically ill folks try to protect those around us from the burden that is sharing in our journey and our daily battles, you also have to do right by yourself and be honest about your experience. As much fun as lying is, I don’t know that we’re really fooling anyone. So shoutouts to all the moms (and other loved ones) who care for their chronically ill bebes, you’re the real MVP.

Russian Roulette: Mast Cell Edition

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

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

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

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

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