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Old 08-29-2018, 01:12 AM
Face Intentionally Left Blank's Avatar
Face Intentionally Left Blank is offline
Join Date: Jan 2007
Location: Hooterville
Posts: 3,088
Originally Posted by tvaetbjorn View Post
What I take from this thread is you're (FILB) insanely depressed, humble, thoughtful of others, and alone. You sound like you're abhorrent of self-pity to the point you aren't, or hadn't, as of the last post I read really forced your personal health and needs on others. I'm almost wondering if you're more frightened of accepting being dependent and under the control of the hospital than you are of inadvertently dying from poor health at home. Actually, I take that back. You sound more likely afraid they'll throw you out again and leave you to die, which would be even worse. It gets harder and harder to believe you're a human being when no one will help in a time of need.

Before you devolve into a gibbering mess, I'd suggest doing the seemingly humiliating/shameful thing of asking a family member to help. As in, tell them exactly how bad it is. Someone who can visit multiple times a day and make phone calls until this is sorted out.

From personal experience, I can say I always believed there was no limit to a person's willpower and sanity. I thought as long as I trudged ahead there was no breaking point. For most of my life, this worked out pretty well and I survived some insanely screwed up things. But, I'm questioning that logic these days. I have a sense in me that there were times, under the right conditions, I could have had a psychotic break just long enough to really end my life, or maybe done something awful in desperation like a third party watching a movie of myself in that moment. And you, sir, are under an incredibly large amount of stress both physically and psychologically. (Apparently, according to your posts.)
Before we dive in here - thank you for caring enough to post. You've read the thread and took the time for a long, detailed message to me, and you did not need to take that time out of your life to do that. The thought and effort is appreciated.

I don't fear death the way I used to. I fear a lingering, painful death, but I've come to believe there are worse things than dying. I fear spending months in a place like this, putting up with pain and stress and hoping I'd recover, then dying - or worse, not. Getting just sick enough that I can never break the spiral of bad health and get anything fixed.

Yeah, I don't want to be kicked out of here. I cannot live on my own right now. Kind of a reasonable concern, I think. Considering that three months and one week ago, I was fairly independant, keeping house and caring for someone else, I also fear being dependent and under the control of the rehab facility, which of late seems less rehab and more The Three Stooges Nursing Home. As for depression, well, I have never been more depressed in my adult life. Not even when was I sick four years ago.

I've spent the last 17 years with Crohn's, all of which were under-served by medical treatment. I've spent the past 12 years caring for my mother and doing almost nothing else. I could have died about 4 years back. The local hospital would not operate and were suggesting conservative, non-invasive treatment, which would not have ended well, according to my (eventual) surgeon. When I was in ICU, one doctor tried to manually reduce my hernia. Only problem was, it wasn't a hernia: it was a huge pocket of infection and feces that looked like a hernia. The part of it that was visible on the outside. Funny thing was, that wasn't what got me to the ER. It was the bilateral PE's that made me pass out when I tried to walk. The PE's likely saved me from the infection. I did not have insurance, it didn;t kick in for another 2 weeks, at the first of the year, and I would have been horribly ill before then. Kind of a miracle I didn't have infection all through my body already. Not too many ppl are thankful for multiple PEs.

One doctor fought for me and got me transferred to a hospital where they'd operate. A year later in a follow-up appointment, my surgeon said that it was the worst he'd ever seen, and that I was one of those patients you never forget. I spent three months in the hospital and rehab. I guess I said all that so I could get to this point: Ever since, all I've really hoped for was 5 or 6 years of reasonable health and enough freedom to visit my friends up north. Freedom to go places without being chained to a toilet and without fear of having 'accidents'. Five or six years to live and make new memories instead of exist, to simply survive through day after day of pain.

I don't have much more to work with. Reinforcements are not on the way. I've hardly seen anyone in 12 years but my sister and my mother. Between my own sickness and Mom's needs, I didn't get out much. Mom's undergoing psychiatric evaluation now, and my sister has to handle that on her own, along with her own job and her life. I see her about 90 minutes a week. I wouldn't have put Mom in a home while I could avoid it, but that's been taken out of my hands now, and all I have left is my hope for my five or six years of relative health and freedom. I about lost my mind when I got my DVT before my back surgery. At that moment, Mom had to go away, and I even lost my dog. There was no choice after that.

Just so much collapsed around me, and still threatens to - ALL BECAUSE OF THE DAMN DVT. If I hadn't had that, I'd have had my back surgery and been back home caring for Mom and waiting on my colon surgery. But because of that one last gratuitous insult, I had to sit here and stare at walls for months on end while everything flies apart like shrapnel.

I have to make it through another 5 weeks to my colon surgery. That at least will be the first progress I'd have made in 17 years, the first progress I'd had in three months of sitting here while my mother bounces around finding a place that can handle her, and my sister tries to keep it together while Mom has her last go at making our lives miserable.

I am just rambling. I'll leave it. You were wondering what I feared. Basically, I feared this. Every bit of this, and still more that's come to pass these past three months that I'm not going to talk about. All I have to do is keep it together until my surgeries and avoid another blood clot, and I'm doing what I can there. Oh, and outlast the kitchen's, "Find the Gluten" sick little game. Spoiler alert: today, they put gravy - chicken gravy, I think - on my plain-hamburger-patty-on-a-plate. Chicken gravy.

That damned DVT has sent multiple lives off-course. Mine, my mother's, my sister's, even my sad little dog. You'd think the cellulitis on my foot, the broken vertebrae, the neverending Crohn;s flare and impending colectomy wound be enough at one time. Not the case.
"It's like a foreign language." - President Donald Trump, on the U.S. Constitution