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)

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. 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

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.

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…

Did you know you’re shaking? Essential Tremor 101

Throughout the life of this blog you guys will probably hear about my tremor a fair amount because quite frankly it has been the source of some of the most hilarious and most dumbfounding moments of my life thus far. So today is just the tip of the iceberg my internet friends. However, I feel I have to start the tremor saga the way it tends to start in life with one of the following:

A) “Oh my god, are you ok? your hands are shaking!”

B) “Did you know you’re like shaking?”

So I’m going to use one of my favorite psychoanalytical phrases, and lets unpack those statements below:

Response A: Ok so first things first, this person is most likely coming at you with concern and general regard for your well-being. However their alarm is 9 times out of 10 totally unnecessary and ends up kind of being a pain in the ass.

Response B: My personal favorite way to recognize a tremor, to which I want to scream, NO FUCKING SHIT DUMBASS, but like I don’t. Deep down I say to myself, they know not what they do, and hope that they too are coming from a place of concern. But again as with before it’s unnecessary and more of a pain for me while I spill hot liquids on myself because I refuse to give up on coffee mugs.

So when I say these responses become a pain in the ass it’s often because people assume that one cannot be both “ok” and have a tremor. This is often rejected or met with more probing questions, which of course makes you anxious and oh wait! Makes you tremor worse and I’m like “ENOUGH Barbara! I’m not probing you about your medical history so back the fuck up!”

The second reason this bugs me is I hate having to make other people feel comfortable about my disability, or my chronic illness. And I am incredibly lucky to be able to fly under the radar most of the time. But it’s bigger than tremors it’s any illness. It’s the notion of oh sorry me coping with my illness bums you out, let me take time and energy to normalize this for you. Ain’t nobody got time for that! I’m perfectly happy twitching up a storm at yoga, and I am not going to worry if watching me deal with my tremor will harsh your mellow.

In short, YES FOR FUCKS SAKE I KNOW I’M SHAKING AND NO NOTHING’S WRONG.