Hello all.
Over the past few months, I feel my health has taken a turn for the worse. Now I'm finding myself deciding if it's wort all the suffering, or if escaping it all is for the best.
I'll recap...
1986: Born, and immediately diagnosed with aortic stenosis with insufficiency
1998: On a trampoline with friends, one of them kicks my leg, and my knee dislocates. My mother refuses to seek treatment and life goes on
1999: I tumble down a slide in roller blades, dislocating my knee once again. This time I see a doctor after screaming for hours, X-rays reveal damage, and the surgeon later says it's the "worst of this type of injury (he's) ever seen".
2000: Diagnosed with scoliosis and told it's moving fast.
2002: Spinal fusion to correct scoliosis. 12 vertebrae are fused together and supported by two long metal rods, held in place by 14 screws.
2002: My heart troubles kick in, with syncope spells happening offen. Mother insists I'm faking it and ignores the problem.
2003: I'm rushed to the ER after collapsing at a friend's house. My pulse is 350+, I'm in aFib for 24 hours, and my mother signs papers for surgery to get it under control. The aFib is being caused by an enlarged heart, courtesy of working harder as the aortic valve wears itself out. As they're getting a team and room prepped, my pulse returns to normal I spend another three days in the ICU, then leave Monday at 10:30am with multiple prescriptions to take for the foreseeable future. My mother still thinks I'm exaggerating everything and I'm back in school by 12:30pm.
2003: My knee goes out again simply walking down some steps. No treatment; mother insists I'm lying. It takes another episode, in public, with dozens of witnesses, to convince her; I have a second arthroscopic knee surgery the following week.
2004: My knee goes out yet again, multiple times. After a total of 8 injuries, inability to walk, and two MRI's, I'm finally scheduled for major surgery. I get a tibial osteotomy, plus a "reconstruction" of my quad muscle, during which it's cut apart and attached to different parts in a last resort effort to keep the damn thing from sliding apart every few weeks. (It works. I can walk, despite being told I may never do so again without crutches)
2004: Stepfather pushes me across a room into a terrarium, which shatters and nearly severs my right ring finger. Surgery to fix this and a lifetime of nerve damage (learning to write again, issues with power tools, etc). Mother claims she'll kick me onto the street and disown me if I don't lie about how it happened.
2005: Open-heart surgery to replace the defective aortic valve and aortic root. It is successful, obviously.
Side note; I was kicked out onto the street to live in a frozen culvert for three nights, six months post-op, and I refused offers to move back in despite possibly freezing to death.
2008: I'm injured at work and break my fusion, plus the hardware, in two separate places (T10 and L3). Workman's comp doesn't even look at the X-rays, says I look fine, and sends me on my way.
2010: I'm taken to the ER for chest pain, and told my heart looks okay, but my back is broken. A few weeks later, I have the fusion revised and all the hardware replaced.
2012: I break my foot doing God knows what, go whitewater rafting, and finally get X-rays after I can't stand it anymore. At this point "hurting" is a normal fact of life and I'm a pro.
2014: I'm told my heart's giving out very quickly. I "shouldn't be functioning the way that (I am)" and the surgeon says he'd be amazed if I made it six weeks without a new aortic valve. A heart cath reveals I'm not a candidate for a mechanical valve and need a cadaver valve instead, and this takes week of waiting and preparation (and isn't even offered in the state I live in). Four and a half weeks of making peace and waiting by the phone, and I'm in Oklahoma having surgery.
Five days post-op I stop breathing (at home) in my sleep and nearly die, but have someone next to me who was able to roll me upright and call 911. Two days in the hospital and I'm back at home for a slow recovery.
2014: The SVT begins. I begin feeling the old arrhythmia problems, but I'm not passing out like I did at a teenager. My pulse regularly doubles its regular rhythm, leading to a strong "fluttering" sensation, dizziness, chest pain, and sometimes still partial or full fainting. It happens more and more frequently until I'm basically bedridden and useless, with my pulse reaching 160+ more than ten hours per day.
Finally scheduled for a cardiac ablation. It's moderately successful but only clears up part of the issue.
Three months later, bedridden and alone, useless, and unloved, I swallow 20+ Percocet prescribed for back pain, which has plagued me since 2002 (and worse yet since 2008). I survive, having vomited half the pills, and a 17 year old girl who used to be in the youth group I taught finds me, laying in my own vomit, half-dressed, on my bedroom floor (apparently word got around somehow, but I'm not sure how)... I'm feeling ashamed, guilty, disappointed, and still in pain and all forms of discomfort, and wish at this point I'd succeeded. She stays with me for several days (which has since raised some eyebrows, but truth be told I was in dire need, she took the time to make sure I wasn't alone, and that's all there was to it).
2015: I'm finally on a stable pain med regimen that lets me work full time. It's shortly after this that I injure my back again, possibly breaking the hardware and/or a pedicle where the screw is attached (photo included). The surgeon who saw me previously has zero interest in treating me and I'm STILL trying to find a second opinion.
2016: I meet the love of my life and get married. I'm also well enough to find a second job, which is a MAJOR challenge with my back; I'm forced to take copious forms of medication of various kinds to keep myself moving and useful for 60+ hours every week, not counting my chores elsewhere.
2017: Pain begins in my shoulder. It starts locally behind my collar bone, but spreads over time until it's widespread and severe, even preventing me from lifting or driving. It feels as if my shoulder blade has been replaced with a cheese grater. It's been likened to "winged scapula", but after three MRI's, visits to six different doctors, and failed physical therapy, there's no diagnosis and it continues to worsen. It's now causing pain that wraps all the way into my chest, into my neck, shoulder, upper back, middle back, armpit, and upper arm. I've been checked over for everything from spinal stenosis, nerve damage, and muscle tears, to lymphoma, pancoast syndrome, and CRPS. Nothing seems to fit.
At this point, the only thing keeping me going is my wife, who's loving and amazing in all kinds of ways. However, I'm stuck every day with the realization that I'll never be enough to not be a burden on her, much less myself, and it's only getting worse.
I'll eventually need heart surgery again, likely more than once. I'll likely need surgery on my shoulder. I'll possibly wind up in a wheelchair due to my back, someday. As I'm writing this, I'm having trouble as my left hand is numb, to texting/typing is difficult.
Now... I've always told myself I want to die on my own terms, somewhere peaceful where I'm reminded of the beauty in the world rather than all the ways I've disappointed everyone in it. I am tired of waking up every morning at 4am to a barrage of pain and discomfort, and the chills of coming down off the honestly excessive medication I take just to keep on my feet. I'm tired of coming home every day, seeing the dishes in the sink, the clothes that need washed, and the home that needs cared for, and knowing I'm not up for the torture. I'm tired of telling my wife we'll have to wait for another day, because intimacy is only going to hurt tonight, and I'm terrified that if we had children, I'd be unable to help in all the ways a father should.
This said, please pray there's something out there that'll help, that can bring this broken body of mine back from the state I'm in, because otherwise I may very well take a drive to some peaceful pasture somewhere and choose not to return.
my khyphosis story
