My Current Situation

[RBeard86]

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.

[coolpolitealex]

Well my friend you've been round the block for someone so young and nobody really knows just how much of a chore it is to keep going than others that struggle day in and day out . So my friend you will find so many stories on here that can humble you and make our own suffering a bit more bearable.

Thing about dealing with Chronic pain is that it is invisible and therefor the people around you can be so insensitive, but you seem to be getting on with your life and for that you have my admiration as keeping down a full time job to support your family must be a chore so good on ya...all the best Alex

[Foxgal17]

You are a hot mess! You are also too young to have such an painful body. I am sorry you are having so much pain and have to work two jobs. My advice is to keep working for as long as possible so you will eventually qualify for social security disability. I retired on it at age 56 due to spinal stenosis and carpel tunnel. My son was born in 1986. It was a very good year. You need psychotherapy to help you deal with your desire to do away with yourself. Your Mother needs a major attitude adjustment. Keep trying for that second opinion. THERE IS A DR OUT THERE THAT CARES! Many don't, but some do. Find that doc. Good luck and God bless from MA, USA!

[MumofSam]

Blimey, just as I was sitting here feeling very sorry for myself and all the pain I'm in, I read your post which puts it all in perspective! Please don't do anything rash. Your wife loves you and accepts you as you are and I bet she doesn't think of you as any kind of burden. As for your mother - she should be jailed for child abuse!

You've come through so much, and unfortunately you're still going through so much, but you sound like a real fighter to me. You've not been a disappointment to anyone, and on here you're a downright inspiration! Also, there's more to being a father than being able to run around with a football or bring back tons of money from a high paying job. The most important role of a father is to love their children, something you very sadly didn't have growing up.

You've been through the mill and back, and you're still here. Please keep fighting to get the help you need so at least your pain can be controlled and you can live as normal a life as is possible for you. Have you told your wife how you're feeling? Get support from all the lovely people who surround you and cut out the horrible ones, and concentrate on getting any and all help that's available.

Please keep in touch and let us know how you're getting on.

[johnsmith]

ER suggests you are in the States. It is worth finding out what local churches there are which you can gel with and ask the the church leader for help. There is a wealth of information and help in the church movement that may surprise you.

Prayer done in the right way (appropriate minister can help) can in the right circumstances help clear the mind so that you can see things with better clarity. You are probably mentally over loaded or close to that. Appropriate Minister also has a wealth of contacts which could be useful for someone in your situation. Having someone to help reduce the stress will improve mental outlook.

If you have a breakdown your ability to handle stress will be much reduced and you could end up only being able to handle low levels of stress. Which is not a good place to be. You are going to have to learn what can I do without. Looking at this issue can be quite daunting and does take a long time because of expectations of the need to be successful. There is the loss that one has to cope with. The loss of good health and the ability to do anything that I what to do.

Sleep is important. Sleep is needed for fine tuning of muscle control. Being able to fine tune muscle control helps in keeping pain and discomfort within certain limits.

Not sure how helpful I have been because the States is very different than the UK.

[calmness]

Ive just read your health current situation.i have no words and i really wish you well and hope you get all the help you need.xxxxx

[RBeard86 in reply to calmness]

Thanks! It's a struggle for sure, but I'm far from giving up. One day at a time, right?