Category: chronic illness

New brain who dis?

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So I keep trashing and restarting this post and I’d venture a guess that it’s partially because I of course want to find the absolute perfect balance of humor and wit and all that crap, but also largely because this topic kind of freaks me the fuck out because it’s real and scary but that’s why I want and need to write about it. I recognize that is a hideously structured run on sentence. Don’t report me to the grammar police I just have a lot of feelings ok?

So back in my youth my brother used to tell people I was “freaky smart,” to explain why his little sister in 7th grade was taking the same high school math class he was. I was an overachieving nerd, he was normal, the “freaky smart” label stuck. Me and my freaky smart brain got along swimmingly, we skipped the 6th grade, won awards, came in 2nd in my class after spending my entire junior and senior years of high school on tramadol. (That experience is a whole other post in itself, not to mention wtf doc thought that was a good idea). Even narcotics couldn’t keep us down. All through high school and most of college even when my body failed me I still had my brain, my intelligence.

But alas, I think you all know where this story is headed, ha get it, head-ed. A little pun for ya there. Anyway toward the end of college which is like almost 6 years ago now, things started to get scary. It was around that time I really started to have neurological symptoms, and frankly I was terrified, because thanks to a few crappy doctors with terrible bedside manner I thought I was looking down the barrel of MS or another aggressive neurodegenerative disease. I had a slew of symptoms that pointed in that direction, tremor, vision issues, temporary paralysis, brain fog out the ass. So here I was a lone 21 year old sitting in waiting rooms of what felt like every freakin department of the Cleveland Clinic terrified.

Thankfully after about two years of diagnostics we ruled out MS, my issues were due to a craft cocktail of a few brain lesions, an essential tremor, small fiber neuropathy, and quite a few issues in my C-Spine. A cocktail I am grateful for, because at the moment it is not creating any more irreparable damage. Fingers crossed.

So where does that leave me and my freaky smart brain? Between the specifically neurological shit and the fibromyalgia, and the mast cell activation syndrome, and the hashimotos, let’s just say it’s a lot. If you look up the symptoms of all these fun diseases there’s a sneaky one called “brain fog” and at first it’s like what the fuck is that? Like how can my joints being inflamed or my thyroid being broken affect my ability to think? Well there’s all kinds of sciencey nonsense but in short: it definitely fucking does. I often refer to brain fog as having a “case of the stupids,” because quite honestly that’s how it feels.

Lately it’s been real foggy around here, which is what pushed me to write this post. It’s hard when you get to a point when you don’t feel like yourself, especially in your own head. I’ve come to terms with my physical limitations and low energy years ago, but this is a hell of a lot harder, especially for that “freaky smart” little sister. My brain doesn’t feel like my brain. I don’t feel intelligent or quick witted. I stare at work I used to be able to do and am just overwhelmed by it. I worry that this is just how things are now, but hope it’s just a rough patch and the fog will clear eventually. Either way I definitely have a chronic case of the stupids lately so sorry not sorry for my terrible sentence structure/tense agreement. I should be ashamed as an English teacher but YOLO.

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Healthcare Hacks: Patient Belongings Bags

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Updated with photos: FINALLY

Prior to my rather sedentary existence in recent years, I was somewhat of a wandering nomad. Never really caring to stay put, accrue things like furniture, or live anywhere more than 6 months to a year. Travel and adventure was kinda my vibe, thus I am very very good at packing. Coincidentally I am also very good at Tetris and overloading the dishwasher. Today, I bring you the first of a series I’m calling “Healthcare Hacks” because alliteration makes everything more fun ok? Ok.

Just a heavily filtered snap from your author, contemplating just how much time I spend on GW’s Health Campus

So last week I go in for the fourth time to the outpatient surgery center to finish a treatment being done on my cervical spine. The nurse gives me my gown and shit and leaves me to get situated, which takes all of 30 seconds given everything I’m wearing is stretchy. The nurse, impressed by my speed, remarks that I must be experienced. Not sure if she meant in undressing in general or in a hospital setting, let’s hope the latter…although if we’re being honest here I am a speedy stripper, anything to get me into my jammies faster, am I right? So after a potentially offensive stripping remark the nurse takes notice of my belongings bag, which is placed neatly at the foot of the bed. I WISH I had visual aids but inside are my clothes of course folded, then inside their own bag within the larger bag are my shoes, virtually heremeticly sealed apart from my cozy clothes.

**UPDATE: Finally have pics for ya, enjoy this groundbreaking discover

This my friends the nurse thought was a true stroke of genius. Never before seen groundbreaking stuff for this woman, who just loved my somewhat obsessive attention to detail when it comes to packing…even in pre-op. I was both honored and also like, woah I’m here too much. You may be thinking, why are you even writing a whole post about this. Well fuck that attitude, because any little thing that can improve a trip to the ER or the surgery center or wherever matters. It felt so nice knowing my shoes were sealed in their own belongings bag and safely tucked in with the rest of my stuff in one bag. You know why? Because it’s one less thing to lose, or get caught in the bed, or fall off. (Last time they dropped my water bottle and broke it, I’m still pissed but trying not to hold a grudge. It wasn’t in a bag so shared culpability? Perhaps).

Can you guys tell my brain fog has been bad lately? Struggling to write in complete sentences. But alas: In summary the key to personal belongings packing is: The Bag within a Bag Method , keeps everything in one place and prevents cross contamination of clothes and foot stink. Hooray!

Again I am so terribly sorry there are no visual aids, I’ll snap some for next time!

Fear & Ablating in Washington, DC

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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.

*In Rihanna* Work work work work work

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

Can you sense the sarcasm?

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

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

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

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

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

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

Caps? Shmaps! I’ll just spill my pills

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

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

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

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

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He’s just not that into you

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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)

Calculated Risks

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There are so so so many conversations I have with my mother and now also with my home health aide husband, that end with the question, “is that a good idea?” The answer to which is 98% of the time is probably not, but I’m also probably going to do it anyway. Bringing us to the topic of calculated risks.

If I lived my life the absolute lowest risk, most health focused way possible, avoiding every know trigger (which is kind of futile with MCAS), sticking to my optimal diet, creating every possible opportunity for rest or therapies, I wouldn’t have much left that makes me, well…me. It’s a give and take. Some things have to give because of budgets, jobs, relationships, and not feeling like you are your illness(s). When I’ve been at my lowest lows I’ve had to live that way and frankly it sucks ass.

Accommodating all that real life shit like a job, a second job and generally being in my late twenties requires a regular amount of calculated risk. For example: I refuse to give up caffeine. I love coffee, I’m a teacher for fucks sake, and yeah so what it’s not great for my brain health, I’m drinking it anyway. Or the fact I work part time at a dive bar in addition to my days of teaching DCs germ infested youth, is it the best environment for a person with MCAS? In the words of Michael Scott: H-E-L-L, double hockey sticks NO! And yet I need the cash, I love the people and you guessed it I’m doing it anyway. Walking out of a double shift with $400 in cash to buy your doctor recommended THC is worth it.

These are just some little examples of normal everyday calculated risk, things I dunno an actuarial may consider, but what I really want to talk about are those high risk high reward situations. The things that I know are without a doubt a terrible idea, that if I tell Dr. Lang about he is going to shake his head in dismay. He’s still hung up on my choice to have a high stress job in a city with gross weather but that’s neither here nor there.

Anyway, recently I participated in one of these calculated risks, that on paper was a really bad idea for a person with my medical profile, but as I like to say YOLO! To which my students respond, “Miss people don’t say that anymore…” Alas my dated expressions and I were invited to participate in a surprise bachelorette beach celebration weekend for a friend that works at the same dive bar I do. We, her colleagues, whisk her away for a debacherous weekend you get the idea. I initially had to decline the invite because I was working a double shift that Saturday (bad idea #1) and didn’t have a ride. However half-way through said shift I get a text from another coworker planning to drive down that night after their shift ending at 2am, leaning in to my poor decision making I say, YAHOO LETS GO! (bad idea #2)

Fast-forward we make it to the beach around 7am, no sleep, I stayed “hydrated” if you catch my drift, and without skipping a beat we joined the beach time fun. With a nap or two here and there, lots of water, and of course remembering my meds, there wasn’t too much else in the way of my usual self care. I did however have a fucking fantastic time, laughed my ass off, and did not think about the usual list of shit that stresses me out once the whole time. This is what I would call high risk high reward. Sure I had to remember my pills, and I definitely got hives from whatever was in my piña colada, and yes I had to sleep two days straight when I got home, but 36hrs of being entirely distracted from the shitstorm of life chronically ill? That’s a pretty good trade off.

The thing about having these kinds of illnesses is that from the moment those symptoms appear and that diagnoses hits, it’s always going to be something you have. That simplicity is gone and it’s replaced by so much shit and we’re just out here trying to navigate this complex mess. So in my book, 48hrs of distraction and laughter and for lack of a better word normal age appropriate shenanigans, is worth the hives, extra dose of Benadryl and day in bed. Just like sometimes accepting a hug from a kindergartener covered in god only knows what, is so so worth it because you’re both beyond ecstatic about his reading growth. It’s a calculated risk, that’s what all the pills and shit are for right?

PS: Dr. Lang if you’re reading this I’m sorry, please don’t break up with me I’ll be a good patient I promise!

Oh you made plans? That’s cute.

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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!

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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

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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.