"Breaking Benjamin - Dear Agony (Aurora Version) ft. Lacey Sturm" on YouTube
Depressing as fuck recap:
I'm literally being slowly tortured to death by a rare autoimmune disease. I'm bed bound, isolated & since I'm rated a "non-cancer" rare disease patient, I struggle to find a palliative care team & fight to get treatment.
I flare constantly, up to every 1.5hrs. The worst being my left hip which is actually tearing itself out of socket; my shoulders & wrists have begun the same course. My sternum, collarbones & shin bones swell at least monthly. My cervical+thoracic spine, sacroiliac joints & sciatica are agonizing. The CRPS burns down both legs & feet + shoulderblades leaving massive hypersensitivity to the slightest touch. My vision is doubled w/haloes, negating reading & writing. I get cluster+migraine headaches. I struggle to eat from breaking teeth, mouth sores & nausea. The attacked connective tissues are damaging my heart, trache & lungs= heart disease + tachecardia, tracheomalacia, & interstitial lung disease. My hair is so thinned, I keep it shaved out of necessity rather than choice. Nights are waking nightmares as the pain increases & chances of sleep decreases. I cry all of the time; from pain, fear, loneliness, hopelessness, exhaustion or all of the above. I've lost the passion & wild vibrancy that used to color my life; something I was once so proud of.
Why is my pain so unchecked? Partially because of my struggle to find proper care; also because I believe I'm on the other side of my disease's progression. At once a fast track to the end & a slow tortuous grind to the dirt.
My Rainbow Bright has been snuffed out; taking with it ALL those who once valued me for it. Entirely depressing to learn I am worth so little; already forgotten for dead. I'm no longer seen as the inspirational fighter, cherished confident or infectious adventurer; instead demoted to broken creature. Though I may be capable of laughing, debating & sharing, apparently it's all too depressing to see. My disease, primary progressive Relapsing Polychondritis with CNS & Vasculitis, has little scientific knowledge, no 10k walk, no telethons, no wrist bands, no centralized treatment. No hope. Therefore, Wade receives no casseroles or support breaks & I receive no visitors or conversation. I struggle alone 90% of the time. Wade's spread so thin as a full time coder, maid, chef, nurse, pharmacist, task rabbit & caregiver. It doesn't leave much social time, understandably.
So, I confess my vulnerabilities with no hyperbole or exaggeration. This is my truthful reality & IT IS AWFUL.
I don't want to die, I don't. I truly love life; but this amount pain & suffering is not sustainable. So, I've begun researching how to acquire a legal "Death With Dignity". It's not yet time, but I don't see me lasting more than a couple of years. (maybe I'll get lucky & the RP will take me out first)
I know this will estrange some from my memory, esp the few religious family members. For that, I apologize. But, it is ultimately MY choice; one I put a great deal of thought into. Ultimately deciding to grant myself the last bit of grace & dignity; a gift of freedom from a battle well fought.