Tag: spoonie

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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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.

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.