Tag: self care

He’s just not that into you

Posted on Posted in chronic illnessTagged , , , , , , , , , , , , , , , , , , , , Leave a comment

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)

Advertisement

Oh you made plans? That’s cute.

Posted on Posted in chronic illnessTagged , , , , , , , , , , , , , , , , , , , , , Leave a comment

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.

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

Posted on Posted in chronic illnessTagged , , , , , , , , , , , , Leave a comment

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

Posted on Posted in chronic illnessTagged , , , , , , , , Leave a comment

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

Posted on Posted in chronic illnessTagged , , , , , , Leave a comment

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…