He’s just not that into you

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

Anyway back to your regular programming:

He’s just not that into you

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

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

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

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

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

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

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

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

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

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

Oh you made plans? That’s cute.

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

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

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

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

PILLS, Baby!

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

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

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

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

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

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

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

“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

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.

No sense in crying over spilled pills

Had one of those moments the other day where something that to a randomly sampled audience would probably be fairly insignificant happened and I was just ready to lose it. Like the worst has happened, there’s no turning back everything is ruined, the universe is out to get me kind of reaction. Sometimes when so much shit is just miles beyond your control and all your energy goes not pulling at that thread, one can overreact, eh rather let’s say manifest multiple emotions in a less significant event. Which is precisely what happened to me the other day.

At this point I hope I’ve created some dramatic build up because this was some seriously disastrous shit and deserves some suspense you guys. So I was sorting my pills because it was pill day (we’ll get into that another time) and I opened one of the compartments Tuesday PM to be specific and it just snapped clean off. It was in that moment I too snapped. First this was a NEW pill organizer, so why the fuck is it even breaking and why is CVS producing an inferior product to the identical one I bought 3 years ago that is still intact? Second, it is SO HARD to find the good super XXL pill organizers I was so excited when I found a second one to have AM/PM that actually held all my shit and now I have to begin this process over? Oy motherfucking Vey. Third, sure I could fix it but then it won’t perfectly coordinate with the AM one and the whole system is aesthetically ruined, something that is probably more important to me than it should be.

The gang before tragedy struck, didn’t know what was coming for him RIP

So, here I am distraught over this pill organizing catastrophe, holding this dumbass little piece of plastic with the T for Tuesday, not sure my plan of attack, and my husband says, “It’ll be ok we can go to both CVS’s and see if they have another one tomorrow.” And I’m thinking, one, it’s good he understands that it has to be the exact same or I’ll have matching issues, that’s love, and two, that it’s really not about the pill organizer ya know? I mean yes I am pissed at CVS but we have a rocky relationship anyway (more tea on that later). I’m pissed that I have 2 XXL pill organizers filled to the brim, a cute lil XL for midday tied to me at all times. I’m pissed about loads of other things it’s just a lot easier to get mad at a little piece of plastic that has wronged you than your own body. Woah deep shit.

Alas, considering purchasing a ton of pill organizers and other drug accessories and writing reviews based of different criteria, size, durability, ease of opening, etc. Ya girl does love to shop…

“I feel like I’m in a Relationship with your answering machine.”

This remark by none other than the polarizing Ross Geller of NBC’s Friends, is not only so 90’s, but it also perfectly describes the relationship I, and basically anyone trying to get an appointment in specialized medicine, probably have with at least one of our physicians’ offices. When I think about the collective amount of time I’ve spent on hold, at the mercy of the scheduling people, or the billing people, or the insurance people it takes me to a bad place. Like a fuck this I’m gonna eat a pack of Oreos with ice cream, and get hives, then pick at the hives until I look like a leper, kind of place.

My most recent one sided relationship happens to be with my neurologist who needs to see me before refilling meds, funny part is her next appointment isn’t for…wait for it…drum roll…almost 5 months! So as one might imagine this is a teeeeny bit problematic as without said meds my brain and central nervous system misbehave quite a bit. After a brief hold of 55 mins (under 60 is brief) I explained the time sensitive nature of the situation and was advised to call back daily to see if there are any cancellations. Cool cool cool cool cool. So just like Ross (in yet another relationship blunder) I again find myself asking: What do I do now?

Before I continue I feel like it’s important I recognize two things: the first is that I know healthcare administrative staff are doing their best, it’s not their fault as so many are working for systems that aren’t patient centered. The second is I also recognize I’m not the only patient, there are so many others suffering this same bullshit which only makes me more upset when I’m on hold for an hour because that means someone else is on hold for two hours. It’s bullshit man.

Being chronically ill starts to become a full time job when the only solution you’re offered is to spend an hour on hold every day to maybe be able to snag a cancellation. Lest we forget we’re doing this on top of already feeling like garbage, managing our meds, and all the other regular adult human shit like paying rent and feeding yourself. The “solution” I was offered doesn’t feel very solution-y to me, but at the moment it’s all we got. Unfortunately I can’t take a break from my neurologist a la Ross & Rachel. I can at the very least rewatch Friends while I’m on hold and thank my lucky stars I have unlimited calling on my cellular plan.