Once again, I’m starting a new post by amusing myself with my own stock image choices. When you think about it, I guess it’s a good skill to have? That skill being the ability to find random ways to amuse myself in the midst of all of the unruly craziness life insists on throwing at me all at the same time in this chronically ill, disabled life.

Simply put, and if you’re new here, you should know that I’m prone to the dramatic. You could even straight-up label me a Drama Queen and not be very far off (or off at all, really).

If you ask my mother, she’d tell you that I’ve been prone to the dramatic expression of my feelings since birth when, as she tells it, people would gush over what a beautiful baby I was and pick me up to coo at my pretty baby face only to have me projectile vomit all over the unsuspecting admirer. My teenage years were legendary.

Things haven’t changed much since then if I’m honest (and I always try to be honest). I downloaded the above image to my computer and named it “woe is me” and then I actually giggled. The giggle was probably 50% ironic, but still. I did giggle. Also, the woman in that photo is wearing clothing that is not actual pajamas with hair and make up done just right, so she’s doing 100% better than I’ve been doing the past couple of months, so I’m not sure what she has to be so overwhelmed about.

When I think about it even more, I realize the current levels of drama I’m demonstrating these days are driven almost as much by what’s not happening than what is happening in my life at the present time. But I quibble! That’s because the end result is me swirling around in a haze of anxiety, tears, protestations and resignations that repeat on themselves, in random order, at various times throughout any 24 hour period (whilst spending all of that time in actual pajamas, hair and make-up decidedly undone).

I don’t want to spend very much time explaining the details of what’s going on because those details bore me a whole lot and I am figuratively up to my eyeballs with the jumbled mess but I realize a little context is always helpful, so I shall devote some time to explaining the current situation.

You may remember that I was planning to cart myself off to Inpatient Rehab this coming Monday or Tuesday when Franzi returns from the tropics where I hope he is spending his much-deserved vacation time (see my last post for details). However, it appears that won’t be happening after all for several very annoying reasons. 

See, I have a regularly scheduled pump refill with Franzi’s associate Dr. Wang. I don’t have a cutesie name for Dr. Wang for obvious reasons. We’ll just leave that be. Franz doesn’t do pump refills so Dr. Wang and I have been acquainted for some time now. He also usually does my Botox because Franz is usually spending most of his time at his IPR clinic and it can be tough to get an office visit with him. Sure. Ok. Why I always find myself working with the docs who suddenly take on highly-sought-after celebrity status is an entirely different issue – but I’m cool with Dr. Wang. We’re buds.

That pump refill appointment is on Wednesday, September 29 which is a very specific date because we don’t want my medication to get low and for my abdomen to start tweeting at me. My baclofen pump supposedly tweets when it gets low on liquid baclofen – tweets like a baby bird not tweets like say @Lesdoggg who you should totally follow on the Twitters if you don’t already – but I digress. I logically assumed there would be someone at Franzi’s clinic who could fill me up with the liquid baclofen that keeps me from turning to actual stone, or maybe Dr. Wang would make an IPR house call to get the job done. We’ve done that before. But that was at West Penn Hospital IPR where Wang has privileges not at “the Valley” which is the hip slang for where Franzi has his new IPR clinic. So to sum it up…Franzi, who obviously has privileges at The Valley can’t refill my pump, so Dr. Wang who doesn’t have privileges at The Valley, will need to do my pump refill on Wednesday September 29 IN HIS OFFICE (which isn’t at The Valley but we’ve already established that, and I think I just like saying I’m going to “The Valley” because it sounds like I could meet up with Cher from Clueless while there and that also amuses me).

I’m exhausted. And not checking into IPR anywhere until after next Wednesday and that’s if I have insurance authorization which apparently is also in question because the kind folks at BCBS of Illinois need reassurance that I can indeed “tolerate” the mandatory three hours of physical and occupational therapy that must happen when one is a visitor at IPR. Um. Right. That’s actually why one finds themselves in need of inpatient physical therapy, isn’t it? Rebuilding strength is kind of the point. Sigh.

All of this is to say that I don’t yet have a plan, nor do I believe I am inclined, after all of this tomfoolery, to actually check myself in anydamnwhere. I’m going to get another pump adjustment at my fill appointment on the 29th. Chances are that will get me closer (again) to where I need to be. Then I’m thinking…it’s almost October! Those limited homecare therapy visits and outpatient PT/OT visits that are included and covered by my insurance plan no longer need to be conserved. I have 12 weeks until end-of-year. I can make this work at home. Whilst using my own superior facilities and getting good sleep in my beloved chair.

I’m not sure Franzi or the fine folks at The Valley IPR will agree with my logic buut at this point, I’m not sure I care because here’s the damn truth:

I’m tired of the limbo thing, people. I feel adrift in the worst of ways. I wake up in the morning and my first feeling is usually, NOW WHAT? I know I’m making jokes and writing all spunky-like but that’s not how I really feel right now. How I really feel right now is that I want to get back to some semblance of living my life. I want to have the strength to dress myself and do my morning skincare routine happily instead of going through the motions. I want to stop dreading the daytime. I want to stop feeling adrift in the nowehereland I’ve been living since the idea of IPR was broached with me. Yes. I guess I allowed myself to move into Nowhereland. I thought I had a plan and then I didn’t and before I knew what was happening there I was. In nowhereland. SO much time has passed since my original plan blew up that it no longer appeals to me. Ok. It never appealed to me but it seemed necessary back then when I was questioning my ability to function in-real-life but here I am! Out here. Functioning IRL. Some might say I’m functioning poorly or at the very lowest levels of what can be considered real-life-functioning but the fact remains that what some might say might also be completely irrelevant. Some might be full of shit! I may even be full of shit by setting ableist standards for what my life should be because let’s face facts: “Some” is actually one and that one is me.

All of this probably sounds so close to sane that you might be wondering why I’m not feeling all upbeat and happy about my potential new plan.

The thing is, the “now what” feeling makes life feel extra hard every single day. I go through the motions. I force myself to get out of the damn sleeping chair and get myself some breakfast – though I often don’t really feel like eating it. Ditto for the other meals of my day and for all of the other daily tasks that make people feel like people. Most of the time I feel like a ghost haunting the spacious accessible hallways of this beautiful house. A flimsy-transparent version of me who recently thought it would be a terrific idea to stop taking the Prozac I’ve been on for 20 years or so because I was making so much great progress in therapy that I probably didn’t need it anymore (I did and I do). I feel like I’m not really fully here most of the time, as crazy as that might sound. It makes getting through the day difficult, she said calmly but is much less calm about this feeling in real life. Most of the time when I wake up in the morning I start the countdown to when it gets dark and I can actually escape the world – MY world – because my world exists in this lovely house these days and even within such a hospitable environment, it often feels like it’s closing in on me. I never know what to do. I seem to have forgotten how it was that I was living even a few short months ago.

Then I remember something one of you might have told me….or maybe it was an internet meme? Or a wise friend or my roommate…Whoever it was, it was what I needed and I come back to it over and over again.

Just take the next step.

Just take the next step, even if that step is getting out of my sleeping chair. Or taking my morning meds. Or drinking my coffee while talking to my oak tree from my kitchen table while watching the hoards of birds, squirrels and other woodland creatures doing their morning thing. When I find myself at a blank space where I don’t know what comes next I try really hard to stop and breathe instead of panicking. Sometimes I panic, though. I cannot lie. I panic a lot. Sometimes that panic overwhelms me and I curse this ghost I’ve become for being so thick and cloudy in her brain. I am mean, horribly mean to her – until I hear my friend Nina’s British accent in my head saying, “Stop having a go at yourself, Beth.” Then I try to remember to be kind to me, kind and patient and all of the things I would be if it were you struggling like this and not me.

I would be so kind to you! So I try to be kind to me, take a breath and remember what the next step might be. It usually comes to me. It might require emergency anxiety meds to get it to come to me, but I am grateful for those meds too. Clearly, I need them. Clearly they help me figure out what comes next. Even if what comes next is brushing my teeth at 2PM.