Tag: patient experience

Prove It

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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

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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)

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.

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

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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.

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

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

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

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

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