Category: Chronic Illness

“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.

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Why Weezy?

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At this point some of you may have become curious or even confused with regards to the name of my blog, asking yourself:

  • WTF does the illest even mean?
  • Wait…isn’t that like a rap lyric?

    • Hopefully today’s post clears up some of your curiosities, and you can understand the method behind the madness.

    “[Bitch] I’m ill, not sick”, was first uttered by Lil Wayne or Weezy, in the song A Milli, on my personal favorite album Tha Carter III. (Actually it was motherfucker, but I’m trying to tone it down just a touch). This line for whatever reason has always resonated with me.
    When I think of sick, I think of weak, helpless, and needy. I also think of acute problems, tissues, cold medicine, “get well” balloons. None of those things match what it really means to be chronically ill. For a person with a chronic illness a “get well soon” can feel like a slap in the face or punch in gut. It’s at that moment I want to say “Bitch, I’m ill not sick.”
    Everyone finds wisdom in different pockets of their lives, and for me Lil Wayne really did say it best, being chronically ill is so more than being sick. So I’m just out here trying to be the illest, to thrive where I can. It almost feels like one of those reclaiming the word used against you kinda things. And whatever your views on Lil Wayne and Young Money as a whole may be, it sure as hell is a nice change of pace from the royal bummer that is being sick.

    Find my titular muse here.

    Russian Roulette: Mast Cell Edition

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    So if you’ve read my saga of a full personal bio you know this, if not SPOILER ALERT, but Mast Cell Activation Syndrome/Mastocytosis are among my principal diagnosis and play a fairly important role in keeping me nice and ill. A huge part of managing this disease is knowing and avoiding your triggers, which makes sense as your mast cells are already doing crazy ass shit on their own, then you throw other histamines in there and it’s a clusterfuck. Very technical language I know, I’m basically a doctor.

    img_1354-1
    SOS from an Uber, perfumes are one of my biggest triggers. Twas just about to barf just moments after this snap.

    The fun part is that virtually anything can be a trigger, environmental changes, food, stress, you name it, we react to it. One might think however that once a trigger was discovered, say dairy for example, you could be like adios queso! Then todo bien, but one would be wrong. The thing that makes MCAS such a sneaky bitch is you may react to something you’ve historically never reacted to before, and vice versa. If I had a dollar for all the shit I’ve had to throw away because it spontaneously started to make me itchy after days or even months of being hunky dory…I could probably quit my second job.

    Alas, this is the essence of Russian Roulette: Mast Cell Edition. Never know if that barrel is empty or filled with hives, tachycardia, and oh so much more. It does however lend hope to the thought one day I may be able to eat Flamin Hot Cheetos again without getting hives all over my body. Silver linings ya know?

    Also quick footnote on #triggered, in the photo it is quite literal in a sense not referring to its definition in a mental health capacity, if you use the term in jest give this a read. Give respect, get respect.