Back the Fu** Up

You can do your best, but the moment you step outside you assume the risk of everyone else’s actions.

Back when my now husband was just some cute classmate of mine at university in Santiago, Chile, he had a penchant (still does tbh) for graphic tees. So these t-shirts would say all sorts of stupid shit, and I was always like come on man, really with the graphic tees? Mind you all of them were in English, and my husband’s English was not fluent at that time, and these shirts are somewhat NSFW, making them even more bizarre in the context of 2010’s Chilean fashion. But there was one shirt to reign them all, which I just couldn’t stand. It was a white tee, with a large graphic of the back of a semi-truck, and in red and black block letters said “BACK THE FUCK UP” and you guys when I saw this shirt I was just like… why? Why is this even on a shirt, why is it in Chilean stores? Why did this otherwise intelligent young man buy this ridiculous and profane shirt?

Throwback pic of my husband with “the shirt,” lovin the pose right?

So this dumbass shirt has always been a joke and point of contention in our 7+ year relationship. I even went so far as to tell him not to even bring it to the US to my apartment, it was serious.

Now why the astro-fudge-brownie am I telling this story? Well this shirt is my new motto. BACK. THE. FUCK. UP. The whole Covid-19 thing has me feeling some type of way, and so many of these feelings end in just frustration, anger, or a felling of helplessness. I’ve already posted on my Instagram briefly about being a vulnerable or at-risk person, and let me tell you everything that comes with that label is heavy as FUCK.

Some of us still need to leave our homes for ongoing medical care, it just isn’t an option not to. I suit up, mask, hat, sanitizer for days right? I do my best, but the moment I step outside I’ve now assumed the risk of everyone else’s actions, and the other day these people were just getting way too close to me, fucking CLUELESS. Guess what I wanted to shout in their faces? Back the FUCK UP! Like where is that damn tshirt now?! I desperately need my 6ft radius bitches.

Should we all be wearing these tees? A staggering number of people don’t seem to give a shit at all. It’s truly unbelievable the actions people have chosen to take in this situation with regard to endangering others health and safety. I don’t know if it is because I am school teacher, but adults choosing not to follow simple instructions makes me so mad. I want to call their grandmas and take away their cellphones for a week just like the 13 year olds in my class. Like “Excuse me Spring Break Brody, in this community we DO give a shit about the well being of others so if you’re not going to get it together, we’re calling mom, and no more White Claws or iPhone until you can show our community you can use them safely.”

Ugh….I feel like I need a major a Tina Belcher style “ughhh” after thinking about some of this stuff. It makes you want a T-shirt emblazoned with “Back the fuck up” just so that’s one less thing to remind yourself and others. Sadly I don’t think the shirt is still for sale, and the original is behind closed borders in Santiago. Rats.

To all my other vulnerable readers, and everyone else I hope people respect your space, your safety, and your health in this time of crisis.

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.

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

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.