The Grief Spiral

So it’s been a minute since we’ve spent some time together here, and imma tell you why. Life has been a little bit of a shit show as of late, well actually as of the last like 4 months. The adage “when it rains it pours” is starting to feel like a bit of a personal tag line. I don’t know what it is about life, or maybe life with chronic illness, but damn it likes to kick you when you’re down. The funny thing about all of this, well not funny ha-ha, funny in a cosmic irony sort of way is that I’ve been through it before and I have a sneaking suspicion it’ll come around again. Are you curious enough yet? Let’s just dive into the chaos together, it’ll be fun.

As you, imagined reader, can literally see in my post below as of July 2021 I was doing pretty well, which as a chronically sick person always feels suspicious. Things were managed, I had a handle on life and Covid-19 was at least no longer ravaging DC, so with extreme caution and hella masks I made it back to work in person part-time. Dare I say I was hopeful, lol, first mistake. Within a couple months, around October I was having major health issues, migraine flares, and some kind of sinus infection that just wouldn’t let up. Not to mention my primary care doc retired, which if you are a chronically ill person, feels like a tremendous loss. They’re not just a doctor but a huge advocate in managing your care with your other providers, and specialists, so that SUCKED. Even though my new doc turned out to be delightful, YAY, we just could not get me feeling better. I had been out of work for a month at that point, contributing to an already taxing teacher shortage due to the pandemic. To say things were stressful is beyond an understatement.

As a sick person, you know you need to take time to get “well” or rather back to your “still sick but well enough to function baseline.” But even after more than a decade of managing work and being chronically ill, especially as a teacher, trying to shake the guilt of letting your colleagues and students down with your absence is a tremendous emotional weight. Logically you know it is not your fault, and there is nothing you can do but to focus on yourself and your health, but the reality of the situation weighs on your mind. By the start of December I was still trying to fight this sinus infection, the fibromyalgia flare it triggered, and really questioning what my future would look like. Working together with my rheumatologist I was able to modify my medication and swap in a new Fibro drug (which of course is $$$), but thankfully it helped pull me out of my flare. I only had to throw-up everything I ate between Christmas and New Years as I titrated but that’s the cost of doing business.

Just as I started to see a light at the end of the tunnel with my health, Omicron surged in DC. As a high risk individual, I mean I couldn’t get rid of a fuxing sinus infection for 3 months, I wasn’t safe in-person in the classroom and I was forced into one of the most difficult decisions I’ve had to make. Unfortunately I had no success in trying to seek accommodation to teach remotely, and didn’t want to be forced into taking unpaid leave that just leaves my students with more inconsistency and lack of quality instruction. Ultimately I decided it was just time to walk away. It was what was best for me to be able to deal with my health, and it was what was best for my students to be able to move on and find a permanent, consistent, dependable solution. Frankly, it was heartbreaking. The real kicker being that this isn’t the first time I’ve had to walk away from a career, a passion, and something I’ve poured my life into for so long.

Fun fact, being a teacher was never my plan. I trained, studied, and planned to be a Curator in an art museum since about age 10. I did everything in my power to make it happen, even as my body threw medical hurdle after hurdle at me. The scholarship, the internships, the study abroad, the GRE, even the PhD program applications were almost done. But as I said before, when it rains it pours right? In my final year of college I reached a point of complete crisis. I had to be hospitalized, I lost a close family member, received 3 new diagnoses, even my long-term boyfriend dumped me. All of a sudden, grad school, that plan, that dream, the intense competitive curatorial programs were thrown out the window. Talk about shitty you know? I barely even graduated, only to pack up and become bedridden.

Eventually, I was able to manage my disability to the point I could work when I found a teaching, mostly because I needed something stable with good health insurance. I didn’t know it would transform into something that I love and gives me a reason to get out of bed most days. But now? Saying goodbye again, all those feelings come rushing back, the grief, anger, sadness, frustration at my own body. I spiraled HARD for a few days, and it’s not like I can just hop along to the next thing. Will there even be a next thing? Not to mention the brutal reality of life as a sick AF person, fighting with insurance days on end, trying to make sure I don’t lose treatments I desperately need, and even begging schedulers to squeeze me in before my 31 days of benefits run out. It’s the most frustratingly helpless feeling I’ve ever experienced. You are on one hand in this personal emotional turmoil, and then on the other quite literally very ill and fighting a fucked system for basic care.

So to say the last few months have been challenging may be putting it lightly, but I think given my new free time I hope to be sharing my unedited thoughts with you more often. It’s cheaper than therapy, and you all know I definitely don’t have insurance to cover that shit. I’ve definitely been in my grief spiral for a lil bit now, and I’m trying to find some closure and acceptance. Our bodies make these choices for us and as often as that happens for some reason I never seem to get used to it. Feel free to reach out or leave comments, I’m always open to give or receive help, although I’d take mine with a grain of salt. Thanks for reading my madness, and remember: I’m TOTALLY FINE.

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Prove It

Many stores have responded to Covid-19 but putting in place special shopping times for community members that need a little extra consideration. Examples of those type of people being seniors, pregnant women, people with disabilities or otherwise immunocompromised. This is a solid thing businesses are doing that they don’t have to, and none of what I am about to say is in any way contrary to that sentiment. I am grateful for these accommodations because safety and sanity are my top priorities right now. With that, now let me tell you about my morning.

I needed to go to Costco. I try to have my husband go, but they were out of things we needed when he went, and when you have IBS and MCAS you just can’t risk running out of toilet paper and generic Benadryl. So I decided I’d venture out on a quiet Wednesday morning in hopes things would be in stock and not too crazy. From the minute I woke up I could feel my anxiety buzzing, even though I triple checked the website that it was the elderly AND disabled all I could think was, what if someone asks me why I’m there? what if they make me prove it?

About 90% of my illnesses manifest invisibly. I really only have a few symptoms that say HEY! Look at me! I’m sick! So knowing I would have to stand my ground in line while a bunch of old people stared at me like, wtf is she doing here? was stressing me out BIG TIME. I knew since it was a going to be upwards of 90 degrees I was going to bring my cane for stability, POTS related dizziness etc. Which sadly was the only thing I was kind of holding on to for peace of mind as some kind of symbol to say, I deserve to be here. Who is going to question the 27 year old with the cane?

But isn’t that kind of fucked when you think about it? I shouldn’t need some visual manifestation of illness or disability to prove to a bunch of strangers that I am in fact ill or disabled. I am just as fucking sick on days when I don’t need a mobility aid, my diagnoses do not magically change. There are also hella young people who are living disabled and chronically ill that don’t need mobility aids but very much need to shop during these special times for their safety, so that creates this issue of society wanting us to prove it. It’s the whole “But you don’t look sick” complex we battle against every day, or the “you’re too young for all those problems” line I’ve heard SO MANY TIMES, well you know what Ethel I have them so what the fuck now?

So here I am rolling up to Costco sweating balls, partly because I always am, and partly because of all this anxiety that I don’t look sick or disabled enough for the general public to accept me. I mean I am used to stares. We all are. We wore masks before Covid-19 was a thing, I use a mobility aid and am under 60. But let me tell you these Senior citizens were obvious AS FUCK. More obvious than my 10 year old students when I brought Sticky to school. Just validating all that anxiety, and I’m just trying to stand my ground, wobbly, but standing nonetheless.

The kicker was at the entrance when I was asked if I was someone’s escort and I nervously replied, Um no, I thought this time was also for the disabled and immunocompromised ? [Shamelessy being like here! Look at my cane! It’s real!] The Costco worker at this point was majorly backtracking and said, “Oh yes of course ma’am, there is a different line on the other side usually, but you good!” To this I am thinking, FOR FUCKS SAKE! Would it kill you guys to have i dunno a sign with some goddamn arrows?, but instead I politely replied that I didn’t know it was my first time coming at this time.

So I’m giving you all this play by play largely just to say that it’s some bullshit. We know disability can be invisible. We know it can impact anyone of any age. We know all this stuff and yet here we are, and it just sucks that you can’t go to the store during a time DESIGNED FOR YOU, without feeling like an anxious mess like you’re cheating some system. Maybe this is just me, and maybe I need to just own it and not give a shit. But it was in the back of my mind the whole time, what if they turned me away? Can they even do that? I don’t like feeling like I need to have a mobility aid or a bad tremor day for someone to believe that I have a disability, but that’s the fight we’re in sometimes. And welp, it’s fucking bullshit man, and that’s what I came here to say.

How do you cope with the haters and anxiety in situations like that? Drop some comments here or on Instagram @the_illest_blog! Thanks for reading my mess

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.

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.

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.”

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.