I am having a weird time- life feels like it’s waiting to start. That’s a bad place to be —I think it shows lack of acceptance….
Acceptance of my illness and where I am at today is something that I am actively working on in therapy.
(It’s mostly Neuro feedback and biofeedback but we do do some talk therapy and it’s helping.)
I mean ….
Mostly it reminds me of all the things I’m supposed to be doing and I’m not, but other than that….
No pressure – really!!
No, it is helping. I mean yes, it does remind me of those things, which is stressful, but they do need to get done- I am not putting my health first the way I need to; my doctor is right about that! So I have made the decision to keep pushing.
It’s hard to keep up fighting the good fight — I’m just tired.
All the years of living with Moyamoya Disease and …not one….. but TWO kinds of chronic pain ~ has drained the will from me. My bones ache. My soul hurts. I am weary.
The disease – the pain – these things combined with being a professional patient – is crushing my will to push forward.
I mean, it’s a full-time job. Truly. (And I am co parenting two beautiful t/weens. So my plate is more than full….).
Imagine it: the nearly-constant stream of to do’s: the dialogue with insurance companies and hospitals, pharmacies, and the like ~ getting prior approvals for everything –
added to the blood draws, the myriad of brain and body scans, the endless paperwork, making the time for expensive trips back and forth for expensive treatments, the surgeries, the appointments, booking the appointments, rebooking the appointments when it happens that I have a TIA – getting my medicines, PAYING for my medicines, applying for grants to help pay for my medicines (lost out on those 2 years running – the grants go so fast now!!! I’m too slow to act: meh),
the cost of supplements and misc necessary things: Pedialyte (for dehydration); o2 masks (they get funky fast); ice packs (life savers!!!!); True Raspberry Lemonade and True lemon (so I don’t choke on plain water – a side effect of strokes in my case) ….
–juggling money on credit cards (ouch) to cover costs of living – always an anxiety provoking experience — like, I need a new mop. And a broom. Food. (Really).
…And two chairs for my little doll-house dining room table…. Because they broke.
-Curtain rods — not the cheap hollow brass ones (I have extra extra wide windows– they neither hold the weight of any of my sets of curtains nor do they stay TOGETHER – they aren’t long enough–)…. This isn’t a luxury deal- it’s for safety and comfort — so I can get some bloody privacy!!!
See, my living room faces a very busy street — there’s definitely room for another “Nekkid” blog in the works, seeing as there’s a nice school crossing guard who works across the street – twice a day, five days a week. (Did I mention my bedroom also faces the busy street??!! AWKWARD!!!!)
So — jeez, man! The noise alone is making me batty.
And whenever I turn on my sound machine (ocean waves, rain, thunderstorm, sounds of a babbling brook or a stream….) I end up feeling like I have to pee.
I’m sort of ashamed admitting this – but I’m not gonna lie!! Hello. (The “needing” stuff – not having to pee.)
I think the admin stuff is where I am just drowning- O.M.G. It’s just insane. Speaking of insane — check this out: I am trying to get a handle on some totally alarming botched medical records from 2008 — this documentation needs to be amended STAT- all because an overworked, understaffed ER nurae was juggling too many charts and confused me with, are you ready??
…. a 48 year old divorced smoker/ former iv heroin user / who has been admitted for suicide attempts on 13 different occasions …. This – BTW — makes a GREAT impression when your neurosurgeon is prepping you for surgery and scans back thru your history and does a triple take – and you have to show your ID in TRIPLICATE to prove that was NOT YOU — ***
(this actually happened / the details are accurate and have not been changed to protect anyone’s identity) ….
Not a day goes by without my attention being pulled in a gazillion directions – and I can’t get out from under it all – the unending requirements for living successfully – and by that I don’t mean my career, spiritual goals, or the like. I mean, just surviving: still. Sometimes I am so ashamed at what my life has become. I feel like I’m living in a bad dream sometimes.
But it’s real, it’s all very real.
And I didn’t CHOOSE it. So frak the guilt. That’s just fuel for a fire I can’t touch.
I know it could be worse & I know – I’m lucky to be alive. But it’s fair for me to want more, to live better, to be happy. Ridiculously happy.
So here’s the deal:
It’s time to make a decision – live with this, let it progress & eat me alive, or rally the dwindling energies I do have, delegate, ask for help to get the big things DONE & just find my inner Betty — my alter ego who has so much power, she practically vibrates — and let her out. Hold onto her for dear life and believe.
(Gritting my teeth now!!!)
~~~~Huge SMILE FOR THE CAMERAS!!!!
Just do it.
Just do it.
One day at a time.
One day at a time.
But better that than being bratty.
I excel at both.